The Importance of a Patient Advocate

While dealing with my late husband’s illness and hospitalizations I soon realized the importance of taking on the role of his “patient advocate.” During several hospitalizations for a surgery, a head injury, that put him the ICU after a fall, and other ongoing care until he died, I felt the need, and was able to be his voice and protector. Even though, much of the time during his illness, he was able to make decisions and ask the appropriate questions, I too, could step in and ask, observe and trouble shoot. The fact that he was a physician and I was a nurse, didn’t hurt. However, having a medical background is not essential to be an effective patient advocate for your friends and family members.

When people are ill, in the hospital, or in a crisis situation, their ability to evaluate what is going on around them may be compromised. If they are seriously injured, coming out of anesthesia, on pain medication, bedridden or just feeling lousy, they may not have the energy or those critical thinking skills required to make informed decisions. That’s where a personal patient advocate can help tremendously.

I assumed that role again, on a recent vacation with good friends. One of my friends was injured from a fall at the airport curb as we were getting ready to leave for home. The stool that she stepped onto as she was getting out of the cab slipped as she put weight on it and she fell face and head first smacking the concrete curb. To say the least, a very scary situation for everyone involved. As we got her up and I looked at her, she was bleeding from a laceration to her left temple. A wheel chair was summoned, medics called and before we knew it, we were on our way to the University of California, San Diego Trauma Center, Hillcrest instead of going home.

She had not lost consciousness and had no confusion (worrisome signs for a head injury), but she was on blood thinners; a risk when you have an injury and are bleeding. It was, indeed, appropriate for her to be evaluated by a physician to make sure she was not bleeding inside her head. Remember actress, Natasha Richardson? She died two days after a head injury on a ski slope from a brain bleed that went undetected because she thought she was okay and didn’t have it checked out.

As we arrived at the trauma unit, my friend was whisked away into a trauma room where things happen pretty quickly with lots of people working on you at the same time…it was a well oiled machine. I was sent to a waiting area and was told that they would come and get me when they got her evaluated and some tests done. Fortunately for us, as close friends, I knew much of her medical history, what medications she was on and could have answered important questions if she couldn’t. She too, is a nurse and was able to do some of her own advocating. However, we were in a city that was not our home, dealing with a medical system and people we did not know. We were at the mercy, so to speak, of those taking care of her. And trusting them is part of the deal in this kind of situation.

Not too much time had passed after she had been assessed and had some tests when I was invited back to sit with her in the trauma room while we waited for those test results. At that point we learned that they wanted to admit her to be able to observe her overnight and so they could do another C.T. of her head, later in the day, to make sure that there wasn’t a slow bleed in her brain.

While in the waiting area I was able to call her husband, a physician, and tell him what had happened and keep him apprised throughout the day. When the test results came in we got her husband on the phone so the physician could talk to him directly and her husband could ask any questions of concern that he might have. This is “professional courtesy” in the medical business, but I would not hesitate to ask a physician to speak with anyone close to a patient who might not be there physically.

The staff at U.C.S.D. couldn’t have been nicer. They were able to get her a private room so I could stay with her through the night. They commandeered a lounge chair from another floor that turned into a cot so I could sleep in something other than a straight chair. I was very grateful and I think my friend was happy to have me close by. And she would have done the same for me.

As her advocate, I made sure that I got the names of everyone we encountered, what their role was in dealing with her. Getting names of those taking care of you or your family and friends is important. In crisis situations, it is nice to have a name to refer back to. Healthcare workers should always introduce themselves to the patient and family, but sometimes, that step is missed, especially in an emergency situation.

So, here are some guidelines for anyone who is assisting with family and friends in a medical setting:

• If people do not introduce themselves to you, politely ask, “please tell me your name and what do you do here?”

• Be another set of ears for the patient. Listen to the information given and ask questions if the patient is unable to ask for themselves or if they have forgotten something.

• Take notes. Ask for clarification of medical terms in lay language.

• Inquire as to when physicians might be making rounds so you can speak with them directly. Ask if you can make an appointment to meet with them while they are in the hospital.

• While traveling with friends, have an idea of any health risks they may have and share yours.

• Everyone should carry a brief medical history in their wallet or in their phone, that contains a list of medications, pertinent current and past medical information, allergies and contact numbers of friends and family members (ICE, in case of emergency)

• If family members or friends are hospitalized, staying with them through the night is a huge comfort for them, but also, in these times of short staffing, you can be a great help in doing some of the small things that a patient needs.

• When medication is dispensed, the patient and/or the advocate should always ask what the medication is and why it is being given, before taking it. Med errors do happen and another check is never a bad idea.

• If someone you are with is injured in an emergency situation, stay as calm as possible. Take in the entire situation and get the names and contact information of those who assisted.

• Keep track of the injured persons valuables and personal items.

• Let medical people involved know who you are and your relationship to the patient. But do stay out-of-the-way of the medical people, especially in an emergency situation and let them do their job.

• Do ask when you will be able to see the patient and what number to call if you have questions. Most special units have a direct line that family members can call to speak with someone in the unit and get an update.

• Be polite, but if you feel the need to assert yourself do it in  a respectful way. You will get better results than if you are angry or accusatory.

• Check the I.D. bracelet of the patient to make sure the information on it is correct. In emergency and trauma units a fictitious name and patient I.D. number and date of birth may be assigned to a patient due to the fact that many people arrive without any identification. The patient’s real name with be added later.

• If tests are done, it is okay to ask when you might get the results. Also, don’t be afraid to ask again. Nurses get busy and getting timely test results can sometimes get lost in the shuffle.

• Do ask about comfort issues, like when they can eat,have something to drink, get up, wash up, brush their teeth, etc.

• Upon dismissal, be sure to ask questions on what may be an issue after the patient leaves the hospital. Go over discharge information with the discharge nurse and get details about future appointments… who makes them. Ask about medications and where you can pick them up. And lastly, what should you do if a problem arises after dismissal.