Read Aiden's story about her life with lupus and how she couldn't have gone through this experience without the help from her mom.
Five Lessons Health Advocates Can Teach Us
Robin Shapiro is the Board Chair of the Washington State Health Advocates Association, a nonprofit organization dedicated to raising awareness about health advocacy, educating consumers and connecting patients to resources and President of Allied Health Advocates, a health advocacy company based in Seattle, WA.
Health advocates are part of a new profession to help patients remove barriers to the care they want and need. This emerging field helps patients by building skills and connecting them to resources so patients can participate and drive their health care experience and make the best decisions possible.
So what can health advocates teach us? Here are five examples of how we can be advocates for ourselves.
1) Be Prepared
The Challenge: Lupus is a complicated disease and sometimes you may not have enough time to discuss all of your questions, concerns and opinions at your medical appointment. Sometimes it is tough to prioritize what is most important at a doctor visit.
The Solution: Prior to your appointment, write down all of your questions, concerns, opinions and symptoms. Next, take one piece of paper and prioritize your top three concerns or questions. Write the rest of your questions/concerns below. Some doctors like to visually scan that paper so they have an understanding of your goals. Be mindful that your doctor may only have a certain amount of time for a scheduled visit. If you have remaining questions, ask your doctor to suggest the best way to follow up.
2) Trust, But Verify
The Challenge: Your doctor prescribes a medicine and you assume that your doctor knows all other medicines you are taking, your entire medical history (including allergies, medication side effects, etc.). Or, you go into the hospital for a procedure and assume you are safe. Medical errors, including medication mixups can occur, so it is always a good idea to check interactions of medicines with your medical history, ask the name of the medicine you are receiving prior to taking it and reading the package insert if you are taking a medicine for the first time.
The Solution: Always carry a one-page list of your current medications. When you are taking a new medication, make sure to read the patient education pamphlet in its entirety, prior to taking the medicine for the first time. If you can, read it at the pharmacy prior to leaving, so if you have any questions you can ask the pharmacist. Some medical questions may require you to call the doctor before taking your first dose. Speak up if you think that you have the wrong medicine. If you are in the hospital, you will also want to double check that you are receiving the correct medicine. A good way to do this is by asking the nurse, “can you remind me what this medicine is and what it is for?” You can also use your smart phone or computer to visually check.
3) Communication is King
The Challenge: Miscommunication and lack of understanding between patients and doctors can lead to errors, inability to follow treatment recommendations and worsened health. Patients may withhold information if they don’t trust the doctor or they don’t want to burden the doctor.
The Solution: Stating your reason for your visit and asking the doctor how s/he would like to proceed can set the tone for a good visit. It is ideal if you are able to bring someone with you to hear and record the information at your doctor visit. Doctors appreciate an extra set of eyes and ears to make sure a patient can focus on the conversation. If you can’t bring someone with you, make sure you are writing down information. Some doctors may allow you to record the visit on your smart phone or tape recorder, but ask if that is okay first. Summarize what you hear at the end of the visit and identify next steps if any, including any reason and timeframe to follow up with the doctor. Establish the best way to contact the doctor (phone, email, after hours contact info) and let him/her know your preference as well.
4) The Golden Rule
The Challenge: Illness, medication, fatigue, side effects and pain can make anyone short-tempered. It is particularly frustrating if you are short on time, you have been waiting a long time prior to seeing the doctor or you feel that the medical staff is not being compassionate towards you.
The Solution: Always treat clinicians and staff with respect. Staying calm techniques: take a deep breath; change your physical posture (stand if you are sitting, sit if you are standing); identify the issue in a constructive way such as, “I am noticing that my nurse is not responding to my call button and I am wondering if we can talk about what a reasonable expectation is for me or if I could be asking for the appropriate help.” Know it is your right to have access to the appropriate care.
5) Assemble the Best Team
The Challenge: A lupus diagnosis typically requires a medical team of people to help with various aspects of the disease over time. Sometimes different specialists may have conflicting advice or may not give you enough information to make a decision.
The Solution: Remember that this is YOUR team. You have the right to seek second opinions. It is okay to choose a doctor or specialist based on how he or she communicates, the doctor’s availability and the advice that he or she offers. If you are in the hospital, it is your right to request and receive a meeting with all of your providers involved in your care during that specific visit together in the room. For example, if you have an outside specialist, but the specialist was not involved in your care for this specific instance, the specialist does not need to be involved in the meeting. This meeting is called a care conference and it happens in the hospital prior to discharge but typically doesn’t happen with the patient. Advocates use this meeting to clarify treatment options and choices, to gain consensus from the team and also to lay out timelines and goals for future health milestones, after being discharged from the hospital.
In 2011, Bonnie and Todd Kassel learned their 12-year-old daughter Taylor was diagnosed with lupus nephritis. Their angst transformed into lupus awareness, advocacy and action. Read more.