The following is adapted from the curriculum that ACRIA uses in workshops to discuss the often complicated relationship between individuals and their healthcare providers:
So -- What's the First Step?
Get involved with your care!
- It's pretty easy to find information about HIV and basic treatment options:
- Through treatment newsletters.
- Through the Internet. Learn how to use the Internet and find places where you can go online -- your AIDS service organization, the library, etc. (See the Spring 2004 issue of ACRIA Update for a list of organizations, newsletters, and websites that provide HIV treatment information -- it's available online at www.acria.org.)
- In today's world of healthcare cuts and managed care, doctors rarely have the time to properly educate their patients on the complexities of combination therapy.
- Do your homework -- know as much as you can about HIV and your treatment options.
- Get subscriptions to treatment magazines and newsletters -- most are free!
- Go to your local AIDS service organization and talk to the treatment specialist or enroll in a treatment education program.
- Talk to other HIV-positive people who are experiencing some of the same things that you are.
Considerations When Choosing a Doctor or Other Healthcare Provider
- Clinic providers are often infectious disease (ID) or internal medicine doctors.
- Does the provider have at least two years of HIV experience?
- Does the provider see many HIV patients?
- Do they keep up to date? Do they read journals, attend conferences and seminars, and participate in other ongoing HIV-specific medical education?
- Nurse Practitioners (NPs) and Physician Assistants (PAs) who are specifically trained in HIV care are also appropriate choices for care.
Location: How far do you have to travel? You may not have a choice.
Personality: Sensitivity to your particular issues -- drug use, gender, sexual orientation, religious or spiritual beliefs.
Relationship: What kind of relationship do you want to have with your healthcare provider? There are various possibilities:
The provider is in control. He or she tells you what to do, and you follow orders. You rely on him or her to know what is best for you.
A collaborative effort. The two of you make decisions, and you are partly responsible for your care.
You make all the decisions. The healthcare provider is more of a consultant. In this case, you have to be very educated on what treatments are available and how to use them.
Word of mouth: Ask other people who their healthcare provider is and how they like the service they get.
Finding the right setting: Depending on your circumstances (Medicaid, private insurance, uninsured), you may have different choices regarding where you can get your care -- a private physician, a private clinic, or a public clinic.
- If you'll be going to a clinic, make sure that you'll be able to see the same provider each time you go.
Continuity of care is important. You don't want to have to start from scratch with a different provider each time -- and you shouldn't have to.
Making, Keeping, and Preparing for Appointments
- If you receive your healthcare at a clinic, make sure that your provider will be there to see you on the day of your appointment.
- Office visits are usually short -- maybe a half-hour or only 15 minutes. Make it count! The first visit should last longer -- 45 minutes to one hour.
It's Your First Visit -- Bring Your Medical History
- If you can get your records from your previous provider, it makes things easier.
- You have a legal right to copies of all your medical records.
- Keep a copy of all of your records.
Take Some Time Before Seeing the Provider
- Make a list of everything you'd like to ask about. This way, you won't forget the important things or the little things that have been bugging you.
- Check the list with a friend before you go to make sure that your questions are clear.
- You probably won't get the chance to ask everything, but think of it as a wish list.
- Check off five things that you really want to ask about, so that you're sure to get to them. Things like:
- New symptoms or recent illness you may have had.
- Medications, natural, over-the-counter remedies, or vitamins you're taking.
- Lifestyle changes, like changes in your diet, your living arrangements, your job, or your activity level.
- Let your provider know about any emergency room visits.
- Questions you have about your medications or new medications you've heard about.
Make a Plan for Talking With Your Healthcare Provider
- For example, if you don't usually talk with your provider much, let him or her know that you want something different to happen this time.
- Start with something like: I know we haven't talked much in the past, but I really want to ask you some questions. I've written some things down ...
Don't Hesitate to Stop Your Provider the Moment You Don't Understand Something
- Lots of times, things snowball -- the provider starts saying something and you're not really sure what it's about. But you're a nice person, so you nod, and the provider keeps talking, and suddenly you realize that you really don't know what they're talking about at all.
- If you find it hard to listen or hear what your provider says (and who doesn't?), bring paper and pen to write things down.
- Keep notes of the important points of your visit.
- You can bring a friend or family member to help you remember what the healthcare provider said. You can even bring a tape recorder (although the tape recorder might make the provider nervous).
- Ask your provider to write treatments or instructions down on paper.
Keep Copies of Your Lab Results
- File your lab results by date.
- Pay close attention to any unusual changes in lab results.
- Discuss any changes with your healthcare provider.
Ask About Your Medications
- What is the name and the purpose of the medication?
- Will there be any interactions with any other medications you're taking?
- What is the dosage of the drug and how often should it be taken?
- Are there any dietary requirements you should know about?
- What are the possible side effects? And how can you manage them if you experience them?
- Is there written material about the drug that you can take home with you?
Get the Names of Other People Who Are Part of Your Medical Team
- Social workers and nurses at the clinic.
- Get to know the receptionist -- he or she can be a huge help to you in the future!
Waiting for the Visit
- Providers almost always run late, sometimes as much as two or three hours.
- Keeping you waiting this long isn't acceptable -- find care elsewhere (if possible).
- Clinics are sometimes the worst in terms of the amount of time spent waiting.
- Be patient, bring a magazine, maybe a treatment newsletter. If the provider is always very late, mention it and ask if a later or earlier appointment would help.
Bring Information to Your Healthcare Provider About Subjects You Want to Discuss
- Providers like it when you're prepared.
Missing an Appointment
- If you miss an appointment, always call beforehand and cancel, if possible, or at least call later.
Communication Skills/Conflict Resolution
Open Up: Don't feel embarrassed about bringing up sensitive health issues. If your provider makes you feel uncomfortable when you discuss your lifestyle or a particular issue, you may need to find another provider.
Be Honest: Don't be tempted to tell your providers what they want to hear -- for example, that you are taking your medications regularly and in the correct way when you're really not.
Communicate Treatment Requests in a Spirit of Mutual Respect
- Some providers don't feel comfortable discussing unapproved or unfamiliar medications -- especially complementary therapies.
- Prepare yourself to discuss them with your provider.
- Know as much as you can about the treatments you want to talk about so that the discussion will be profitable.
- Of course, your opinions may still differ.
- Remember that even if you disagree with your healthcare provider's opinion, his or her opinion may still be valid.
Be Prepared for the Emotional Content of the Visit
- New health problems or a new diagnosis can be emotional.
- Getting too emotional will distract you and your provider.
- If you need more time to make a decision about something, tell the healthcare provider that you need to think about things and will call later to make another appointment -- or schedule another appointment before you leave.
Ask for Things in a Friendly but Firm Way
- If the healthcare provider disagrees with your request, ask why. There might be a good reason.
- Ask questions -- repeatedly if necessary. If things still aren't clear, ask for a simpler explanation.
When You Find a Healthcare Provider Who's Good, Let Him or Her Know
- Like anyone else, providers like praise.
Tell Friends That You've Found a Good Healthcare Provider
- Recommend him or her to others.
What to Do When Your Provider Isn't Available
- When you call the clinic or the doctor's office, your provider usually isn't there or isn't able to take your phone call.
- Depending on what you're calling about, you can often get help from the nurse, the PA, or someone else who works there. That's one reason why it's a good idea to know the names of everyone on the medical team.
- If it's a serious problem and you must speak with your doctor, be clear that you'll be waiting for a return call -- and be sure to be available at the number that you leave.
Healthcare Providers Are Human
- They make mistakes, too.
- When problems arise between you and your provider, discuss them politely.
- If you don't think that the provider adequately addressed or solved the problem, ask again.
- Being an aggressive, inquisitive advocate for yourself is not rude or hostile.
- Most providers can handle disagreement as long as it does not get personal.
- A good healthcare provider is one who will fight for you:
- Try to get you access to particular medications, even if your insurance or payer doesn't cover them.
- Get you into a clinical trial if it is right for you.
- Refer you to a specialist if the need arises.
Firing a Doctor or (a Better Term) Switching
- Find a new one first.
- Sometimes a relationship just doesn't work for a variety of reasons.
- Give it a lot of thought before switching.
- If clinic providers are always changing, ask to see the same provider each time you go.
- If the provider has moved to another location, find out where he or she is.
- Some women may want to visit a women's clinic so that they can get all their care in one place.
Getting a Second Opinion
- Maybe see another doctor if you aren't satisfied with your regular provider's opinion about an important issue.
- Seeing another doctor may be particularly helpful when you're confronting a significant decision about treatment options.
- Think about enrolling in an information-gathering trial in which you can get free blood work.
This article evolved from a fact sheet originally created by Sally Cooper and the staff of the PWA Health Group. It has been expanded over time by ACRIA's treatment education staff with input from ACRIA's Community Advisory Board and the clients with whom we work.
Healthcare Providers Don't Receive Any More Training Than the Rest of Us in How to Be Human Beings
- Some are kind, some aren't so smart, some are malicious, and some are really great people.
- They may be nervous and hate that they sometimes don't really know what to do.
- They hate that they don't have a cure to offer you.
- They rarely try to cause harm.
- They're often overwhelmed, but rarely admit it. They carry their arrogance mostly to protect themselves, not to hurt you.
- As in any other relationship, calling them on their stuff can sometimes help communication.
- If it's not working, move on if you can!
- Never forget that the healthcare provider works for you. It's your body, your health, your blood tests, your HIV. You are paying the provider's rent for him or her every time you walk in the door.
Some states have specific requirements in order for a healthcare provider to be designated a specialist in HIV care. In New York State, for example, providers must have the following experience and knowledge to qualify as HIV Specialists:
- Direct care of at least 20 HIV-positive people during the past year, including managing antiretroviral therapy in those patients;
- Ten hours of CME (Continuing Medical Education) each year that includes information on the use of antiretroviral therapy;
- The latest information about HIV disease and treatments;
- State-of-the-art diagnostic techniques, including viral load measures, resistance testing, and immune system monitoring;
- Management of opportunistic infections and diseases;
- Expertise in the management of HIV-positive patients with common co-morbid conditions, including tuberculosis, hepatitis B, hepatitis C, and syphilis;
- Access and referral to clinical trials;
- Proper referrals to other providers for specialty care (oral, ophthalmologic, obstetrics, gynecology, dermatology, nutrition, drug treatment, etc.);
- Strategies to promote treatment adherence;
- Patient education, including risk reduction/harm reduction counseling;
- Post-exposure prophylaxis protocols and infection control issues;
- An understanding of counseling for women of childbearing age, including knowledge of contraceptive methods and ways to prepare for a healthy pregnancy.