The phone rings and six words later you hit your target heart rate: “Your mom is in the hospital.” (The hospital?!) The adrenaline is going to overtake you for a while, but if your mom is admitted, you need to calm yourself so you can be an effective health advocate.
This one is for you if someone you love is in the hospital, you regularly manage the medical affairs of a family member, or you just want to know more about how to be your own health advocate.
Here’s what the most effective health advocates do:
Effective Health Advocates Educate Themselves
The first thing you need to do is get educated. Read up on the condition or the injury that led to the hospitalization. This will allow you to use your limited time with the doctors to talk about specific concerns and recovery plans. Johns Hopkins University and Mayo Clinic both have great sites, and there are many helpful disease-specific resources you can check out. If you find yourself reviewing medical journals at 3 a.m., you’ve probably gone beyond what’s necessary. Try to relax and get some rest. You have to get up early to be at the hospital for “rounds”.
Effective Health Advocates Are There for Rounds
Patient rounds are when doctors visit patients at the bedside to coordinate care. Ask the nurses what time of day the doctors typically round. Nobody will guarantee a time but they should be able to give you a time range.
In a hospital, attending rounds is the only reliable way I’ve found to see the people treating your loved one. Sometimes I had to get to the hospital at 6:30 a.m. to talk to doctors who rounded before they went into surgery. Other times I missed a half day at work to see doctors who rounded after seeing their patients in the clinic. It was worth it to have direct communication with the people in charge of the care and to get our questions answered.
Trust me, you want to be there for rounds.
If you can’t be there, try to arrange for another family member, friend, or professional advocate to go and take notes. This may involve some extra coordination and paperwork, but again: it’s important to have more than one set of ears listening to the medical team. (And more than one mouth asking questions!)
Effective Health Advocates Have Permission
You’ll need to have a “seat at the table” if you want to ask questions. Ideally, you have been asked to be an advocate and support your loved one before the emergency occurred. You have a medical power of attorney and a signed HIPAA authorization form. (HIPAA is a law that ensures your healthcare providers keep health data private and secure.)
In emergency situations, institutions are given leeway to share relevant information about the patient “if the health care provider determines, based on professional judgment, that doing so is in the best interests of the patient.” Judgment is a fickle thing, though. Find out what you need to do to get authorized, and ensure your name is added to the patient record so that when you call the nurses station or the doctor, nobody has to worry about whether they’re “allowed” to talk to you.
Effective Health Advocates Know the Goals
You can ask and ask and ask when the discharge date is, but you may not be satisfied with the answer. A better question is “What are the goals?” This is a question the hospital team might actually be able to answer. They don’t know what the tests will say or how long it will take to “fix”. But they do know the goals.
Goals may include diagnostic tests or therapy goals that need to be accomplished before the patient is discharged. If you know the treatment goals, you will know what needs to happen before going home (or rehab, or whatever’s next), and you can keep track of the progress that way. If this doesn’t help, you ask questions. You ask for help. You ask for referrals. You ask for training or education if you feel you need it. You keep trying until you know what the goals are, and you’re out of (medical) questions. (See here for a discharge planning checklist.)
Effective Health Advocates Are Organized
You’ll need to be organized to be effective as an advocate. I found I got more respect and attention when I could easily answer questions about my parents’ health history, current medications, and any medical conditions for which they were under treatment. It was like having a fast track to a more meaningful conversation with doctors and nurses.
Get organized, and be prepared to share their medical history. (You can download a free medication list template here, or check out Life in Motion if you want to create a more complete emergency plan.)
While you’re in the hospital, take notes. You may need them later.
Effective Health Advocates Understand Insurance
Health advocates understand insurance. If you know what your mom’s insurance plan will pay for, you’ll have a better context for the conversations you’re having with the medical team. The medical team understands how insurance works (though not the specifics of your plan.)
That means they know what will get reimbursed and what may not, and this influences everything. Understanding what your insurance plan pays for is like being able to see the invisible smoke that pervades any hospital setting. And which way it’s blowing. You may also need to contact the insurance provider if you see errors in your medical bill (it happens!)
Effective Health Advocates Know What Comes Next
Your job as a health advocate doesn’t end at discharge; you’ll be helping with the follow-up, too. Doctors inside and outside the hospital may communicate with each other but they may not. Even if they do, you were there, and you’re likely involved at home. You’re in a good position to make sure nothing gets lost in translation. You can describe the sequence of events and answer questions not answered in the medical record notes. (That’s where your own notes come in handy!)
If you can, try to attend the first follow up appointment after discharge to make sure the recovery stays on track.
If you’re not nearby when someone you care about is hospitalized, consider hiring a private health advocate or a geriatric care manager. (This is also a good option if you don’t have someone you trust to be an advocate for you.)
Nothing’s going to stop the adrenaline from flowing if someone you love is hospitalized, but understanding the context, asking questions, and doing all you can to prepare can help contain the crisis.