Healthy Living: How to be an effective patient self-advocate 

By- Dr. Joan Marie PellegriniIn today’s complex medical world it is no longer acceptable to be a passive participant in your medical care and to leave all the decision making to the physicians. Patients with complex medical issues may be seeing multiple providers and also may have their care at more than one institution. There are many medical conditions and medications that require a significant amount of patient education. It is for these reasons that many patients now need to be more involved in their care and their medical decisions. Self-advocacy is the ability to recognize, understand, and effectively communicate your needs to other people, including friends, family members, social workers, and medical professionals. Being an advocate for yourself means being actively involved in getting what you want and need.Below is a list of suggestions that I have for being more actively involved in your healthcare. I do not expect that you would need all of these suggestions but rather you select the ones that make sense for your level of medical complexity.-) Write down a list of questions/concerns you may have before your appointment. You may want to do some research before your appointment so that your questions will be more targeted and appropriate.-) Take notes during your visit with the doctor.-) Designate someone who can call on your behalf. You will need to list this person in your record and will need to sign a consent for your providers to discuss your care with this person. This person should also go with you to your appointments so that they can also listen to what is being said. This is particularly important if you have a complex medical issue or if you will be receiving upsetting news.-) Get a folder that has separators or use a journal. In this folder you will keep your medical information. You should have sections for contact information for medical providers, list of diagnoses, imaging results, laboratory results, list of visits and what each visit was for. This folder would also be a good place to keep your advanced directive.-) Write down your diagnoses at each visit and make sure you understand what they are. During your visit is an excellent time to ask your provider what web resources they would recommend for you to gain further knowledge.-) Every time you have a test or something with a result, make sure you obtain a copy. Do not assume that everything is OK if you hear nothing. Before each test is ordered, ask your provider what time frame you should expect to hear the results. Understand what the results mean and what the next step is.-) Ask about your medications. Verify the dose and timing. Verify that you know what each medication is prescribed for. Educate yourself on the side effects and interactions with food or other medications. Much of this can be researched on the web before your appointment so that you can ask specific questions directed at your needs.-) If your condition is complex, it is acceptable to ask your provider if a second opinion might be beneficial. If they agree, they could also make some recommendations.-) If you are having a procedure done, there are a few other questions you should ask:+) what can you do to prepare for the surgery? What can you do before or after surgery to optimize the outcome?+) what are the options available? Is not undergoing a surgery an option?+) what are the risks and how likely are they to happen? If there is a complication, what will happen or what will need to be done?+) has the provider done many of these procedures? For some procedures, there are online resources that will educate patients on national quality initiatives and how to choose a hospital that offers best practice.+) for most procedures, the patient is better served to have the procedure close to home. However, this may not be the case for complex procedures. You will need to balance the risk of being far away from your physicians and support network versus obtaining specialized care that may not be provided close to your home. Your primary care provider can help you with some of this discussion.-) If you are being admitted to the hospital, ask if your advocate can be present during rounds so that all of your questions can be answered and so that you will understand the plan of care. If you do not feel you need someone present, consider taking notes so that you may understand what the goal is for the day and the plan of care. If your care involves multiple specialists, write down their names and specialty so that you may understand what the role is of each member of your team.-) If your provider is referring you to a specialist you should understand what is the question or problem that the specialist should address. If you are seeing multiple specialists you may want a copy of their consult note so that you can keep track of who you are seeing and for what purpose.-) Know your health care plan. Understand what bills you will be responsible for. Ask if there are resources available such a manager for chronic disease, nutrition counseling, reimbursement for gym membership, or other wellness resources.-) Speak up if you do not feel your needs are being met. If you still cannot get satisfactory assistance, ask to speak to a manager. If this do not work, there may be a Patient Relations Representative or Patient Ombudsman who could assist you.