Be The Best Advocate You Can Be For Your Loved One

DIANE GASAWAY

BE THE BEST ADVOCATE YOU CAN BE FOR YOUR LOVED

The medical maze of office visits, tests, procedures, scans, labs, and protocols can be intimating and sometimes you may feel like you are having to fight your way through. Add to that the necessity of processing an overload of information in a unique medical language that is difficult to understand and it is easy to see why anyone with a serious illness needs an advocate.

Advocates are essential assets for patients who are often at their most frightened and vulnerable. While it’s a difficult job, you as an advocate have the opportunity to improve the overall care and comfort of your loved one.

We have a plan to help you be the best advocate you can be for your loved one.

It will take:

• Knowledge

• Patience

• Determination

• Organization

• Follow-up

• Assertion without aggression

• Being another ear – and much more

Realize that you are entering a medical setting for only a brief time where others – the physician, nurses, lab techs, and other medical personnel are spending a lot of their time there. They know the language, they have the knowledge, they can prescribe medication, order tests, read scans and they have dealt with the situation that is new to you, many, many times before.

Being an advocate means being willing to be an extra set of eyes and ears to stand up for your loved one if necessary, to make sure they are receiving the best medical attention and care they deserve. You are also their voice because they may be unable, unwilling, or too embarrassed or intimated to speak up.

FIRST: Have a conversation with your loved one in which you both are clear on the kind of support that is needed or wanted. The support level may change as the illness progresses or improves, but without agreement on this you can not be a successful advocate and you may both end up disappointed and frustrated.

Some duties of an advocate:

• Help Prepare for the Appointment |
  This can mean scheduling the appointment, helping them dress appropriately, transportation to and from the appointment, and ensuring necessary information is available at the appointment

• Taking Notes at all Appointments and Conversations |
  You may want to have one notebook dedicated only for appointments or you may want to take notes on use loose notebook paper that you can later put in a book under the appointment tab. Make sure you date each visit, including the physician's name, the reason for the visit, the outcome of the visit, and whether a follow-up is needed or additional testing is scheduled

• Giving Your Perspective on How Your Loved One is Doing | Sometimes your loved one may not present a realistic picture of their daily struggles or successes. You may have insight of symptoms or changes that need addressing that your loved one is not aware of or unwilling to bring up

• Asking Questions and Making Comments When Appropriate |
  If the physician says something you don’t understand and your loved one doesn’t question it, don’t assume that your loved one understands it. Sometimes we just nod and say ok when we don’t really understand. Your job as an advocate is to question everything that you don’t understand. Ask the physician why a test is necessary or what they expect to learn from the procedure.

• Speak Up |
  If you feel the encounter with the physician isn’t going well, express those concerns. It takes a great deal of courage to speak up in these situations, but often, the whole tone of the interaction changes for the better once the doctor or care team is aware you or your family member isn’t comfortable or has lingering questions.
  
  If there is a test that you would like to have performed and it isn’t on the schedule, bring it up. Explain the value you see in the test and ask the physician if that is something that can be done to reassure you. It will at least start the conversation

• Advocate for Your Loved One if They Are Hospitalized |
  Request warm blankets, or a change in room temperature, or ask for whatever you think would make the stay easier for your loved one.
  
  Talk with the doctor or nurse outside of the room in private for serious conversations. Request a meeting with the physician if you have questions and be open to scheduling the meeting.
  
  Be on the lookout for errors. Ask what medication is being given and why. If you don’t understand something, ask and keep asking until someone can explain it to your satisfaction. Be nice, but firm.

• Allow Your Loved One to Do Most of the Talking |
  Direct the physician or nurse to speak directly to your loved one. You are there to support your loved one, not to take over unless, of course, they are unable to participate.

Being an advocate means:

• Have All Medical Records Handy and Portable to Take with You to All the Physician Appointments |
  Compile a personal medical file containing as much medical information as you can gather. Include tests, lab results, and notes from any surgeries that you can get. Don’t assume that every physician you meet with will have every result from every test. Especially if multiple specialists are involved. You may want to make a “cheat sheet” of the major events, like surgeries. Include the date of the surgery, the physician who performed it, the reason for the surgery, the facility where it was performed, and the outcome. Prepare a cheat sheet for medications, as well. Include the medication name, dosage, how often it is to be taken, when it was prescribed, and by which physician and for what condition.

• Having A Signed Consent Form on File That Allows You to Be Present During the Consultations and Communicate with the Physician and Staff |
  All medical offices are required to be HIPPA compliant. Make sure all the forms are in place allowing you to participate in the conversations.

• Ask Your Loved One to Complete An Advance Healthcare Directive, Living Will, Five Wishes, or Other Legal Document Specifying the Medical Actions They Authorize in the Event They Are Unable to Make Decisions Regarding Their Care |
  This includes the level of measures or extreme measures they want or do not want if a life-threatening event happens.
  
  This allows your loved one to make decisions before they are in a situation where they may be unable to make those decisions. It also clarifies for you what their wishes are and relieves you of making those decisions during an emotional time.

• Talking About End-of-Life Issues |
  The reasons for this are the same as the reasons above.

• Learning As Much As You Can About the Medical Condition to be Familiar with Symptoms, Various Stages, and Treatments |
  Knowledge is power and knowing what to expect, what is normal and what is not normal for the disease will help you determine if something else may be going on. When in doubt, seek the advice of the physician.

• Keep a List of Questions and Make Notes Between Appointments |
  Don’t rely on your memory to remember something you want to bring up with the physician. Keep a pad or notebook handy to document any changes in symptoms, behaviors, sleeping, eating, or anything else that is different in the daily routine.
  
  Highlight any changes that you want to bring up during the office visit. The changes that you see daily between office visits may be significant and indicate something that needs addressing.

• Keep a Folder for Financial Statements and Insurance Responsibilities |
  Before paying any bill from a provider, verify with your insurance company that the amount being billed is your responsibility. Sometimes providers send out statements before insurance has had a chance to process the claim. Reconciling insurance claim processing with provider statements can be time-consuming and confusing, but you do not want to pay more than your legal responsibility.