How to Advocate for a Loved One in the Hospital
How to Advocate for a Loved One in the Hospital
When someone you love is hospitalized, you likely want to do everything possible to make sure they get the best care. It may seem like a daunting task. After all, you didn’t go to medical or nursing school. Doctors may seem hurried and unapproachable. You may feel intimidated by their stature and knowledge.
What’s more, hospitals are scary places. The sounds, smells, language--even the food--are all different from our usual day-to-day experiences. Family and patients alike may feel like strangers lost in a foreign land. Where do you even begin?
For starters, take a deep breath. You have more to offer than you may realize. As a family member, you are not a visitor in the hospital room. You know the patient better than anyone else in the hospital and are an important part of the care team. That should be recognized by the doctors, nurses, and other medical professionals taking care of your loved one. If it’s not, you may need to nicely remind them!
Being an advocate means finding your voice and trusting your instincts. That’s how you can be most effective. For many of us, these are learned skills. So be kind to yourself if you don’t acquire them all at once. Like parenting, we learn what we need to know as we go along.
My husband, who is doing well now, was hospitalized 14 times over a 24-year period. A few were relatively minor situations but most were serious and some involved life-threatening circumstances. One of the things I learned as his advocate is that my role is as important as the doctors and nurses. It’s just different. I don’t pretend to have specialized medical training or skill. I don’t substitute my judgement for theirs. But I know my husband just as you know your loved one. And I know that my involvement can make a difference in his care. Sometimes it can even be lifesaving.
How do you become an advocate?
The first thing is to make sure you take good care of yourself. Get rest, eat and sleep as well as possible, take breaks. Let others help you. Remember, you can’t help anyone if you get sick or rundown yourself.
Next, be as prepared and informed as you can. Keep a folder with all pertinent information including a copy of the patient’s advance directive, medical power of attorney, and other documents. Also have a copy of current medications, significant medical history, and names of doctors that your loved one currently sees. If you have access to the documents given to your loved one at the time of admission, keep those papers in your folder as well. You never know what you are going to need or when you are going to need it.
Also keep a notebook handy and track as many details as possible--the names of the doctors seeing your loved one, their area of specialty, which one is in charge of your loved one’s case, what tests are being performed, what diagnoses and prognoses are available to you, and what questions you want to ask.
In the midst of the Coronavirus pandemic, it may be harder than ever to catch up with busy doctors. (It is difficult enough under normal circumstances.) You may not be able to be with your loved one in the hospital or may be limited to strict hours of visitation. Either way, make use of the telephone and technology to stay connected. Ask if the doctor uses an app to include you in morning rounds or other conversations involving your loved one. If that doesn’t work, try to schedule a phone or online appointment to discuss your loved one’s condition.
You may have to be tenacious in insisting on some form of communication. Medical professionals are stretched to their limits by the pandemic. So, it’s important to remain professional and calm. You’re likely to get the same treatment in return. Also make good use of your time with the notebook as your guide. Ask the most important questions first. Don’t be like Inspector Colombo saving the critical “one more thing” for last as the doctor is walking out the door.
Nurses can be your best friends in the hospital. They are natural advocates for their patients and often are able or willing to take extra time to explain circumstances to you and your loved one and help you understand what is happening. They also can be effective in putting you in touch with doctors when you need extra help making those connections.
The more you know and the more you can share as your loved one’s advocate, the better theY will fare in the hospital and later at home. For example, families can:
- Fill in the blanks when the sick patient doesn’t fully comprehend everything being said or is not able to remember it later;
- Bring information, perspective, and insight that patients often cannot or will not share themselves; and
- Ensure instructions are followed regarding medication, doctor visits, exercise, driving and other restrictions when the patient leaves the hospital.
This may sound like a lot of work. I understand because I have been there myself. I showed up for early-morning rounds, insisted doctors listen when I had important background information to contribute, enlisted the help of nurses to make sure my husband got the care he needed, and fought the good fight all the way to the top of the hospital hierarchy when I knew it was necessary.
I can assure you that the effort is well worth it. Research shows that patient and family-centered medicine provides the best clinical outcome, increases patient satisfaction, lowers costs, reduces risks of readmission and can save lives. So, go to the hospital prepared, in person or virtually if necessary, to participate as a member of the care team. You have a lot to offer, and you just may help save your loved one’s life.
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