As a former Capitol Hill staffer and lobbyist, I learned how to advocate for health policy. I used my advocacy skills in the hospital and the NICU to advocate for my daughter. If you have a baby in the NICU or a loved one in the hospital, you must serve as their advocate. Focus your efforts on pushing for what is best for your loved one.
For those of you who are not familiar with lobbying or advocating, Merriam-Webster defines the term, advocate, as: "1: one that pleads the cause of another; specifically : one that pleads the cause of another before a tribunal or judicial court; 2: one that defends or maintains a cause or proposal; and 3: one that supports or promotes the interests of another."
As a family member to a loved one who has been hospitalized, you need to promote whatever is in the best interest of that person. Below are a few tips to help improve communication with doctors and nurses -- and suggestions on how to become a better patient advocate. Personal anecdotes are also included.
Keep a Notebook/Journal
Tip: Use a notebook to keep track of daily medical activities, such as your assigned doctor and nurse of the day, blood draws, medications received, and conversations with hospital personnel. Write down any medical questions you may want to ask. Your doctor will probably only visit you once a day and you don't want any burning questions to have to wait until the following day.
My Experience: During my hospitalization and my daughter's NICU stay, I kept a notebook to record conversations with doctors, nurses, respiratory therapists, and other hospital staff. I wrote down the name of my assigned doctor, nurse and patient assistant for the day. I also took note of blood pressure readings, medications, the collection of blood and urine, the installation of new IV lines, diaper changes, baths, oxygen levels, etc.
I wasn't shy about taking notes -- and neither was my family. When a hospital staff member walked into my room or my daughter's NICU room, my pen and notebook made an appearance. Oftentimes, I took notes, or my family recorded information, while the doctors and nurses were talking with us.
Since being in a hospital can be a blur, especially when you are exhausted and stressed out, the notebook helped me keep track of daily activities. When a hospital staff member asked when my IV had last been changed, or the amount and frequency of feedings for my daughter, I could look through my notebook and provide them with a quick answer. Although some hospital staff appreciated my note-taking, others were not so fond of it.
Inform Hospital Staff of Your Expectations
Tip: Inform the NICU staff of your expectations. NICU staff may find infections and room changes to be routine, but to a scared-to-death parent, these events are completely out-of-the-ordinary.
My Experience: I assumed that the NICU staff would inform me of major occurrences, such as new medical issues, infections, and room changes. Unfortunately, that wasn't always the case. Some NICU doctors and nurses considered these to be regular events that did not warrant parental notification.
On more than one occasion, I learned that my baby was in isolation because a yellow sign was posted on the door of her room notifying me of the situation. The sign was always vague -- and never provided any rationale. I would have to hunt for our assigned shift nurse to get the scoop.
One day, I was completely surprised when I had to gown-up and glove-up to visit my daughter due to a Methicillin-resistant Staphylococcus aureus (MRSA) outbreak. At least eight NICU babies had either been infected or colonized with MRSA. This impacted me personally as my daughter was colonized, which was a huge disappointment. My daughter wasn't born with MRSA colonization, so she obviously became colonized in the NICU.
Another day, my daughter's room was changed without advance notification. I learned of the room change while I was washing my hands at the NICU entryway. One of the NICU staff members happened to be leaving for the day while I was walking into the NICU for my daily visit -- and mentioned the room change.
Although I was notified seconds before entering my baby's NICU room, the Mama Bear in me made its debut. I expressed significant disappointment to NICU staff because I wasn't informed of the room change in advance. I was concerned that my baby's new room had previously housed a MRSA-infected patient and wasn't properly sanitized.
Of course, due to the Health Insurance Portability and Accountability Act of 1996, information about the previous room tenant could not be disclosed. I was assured that the room was properly cleaned, only to find a Band-Aid stuck to the floor of her room. This ignited even more disappointment, as well as meetings with hospital cleaning staff. I can't imagine how I would have reacted if I had walked down the NICU corridor and found my baby's room empty. I'm sure that I probably would have thought that something terrible had happened.
Tip: If you don't like the medical care that is being recommended, express yourself, ask questions, and continue to advocate for what you think is best. In addition, don't be afraid to interject yourself and ask questions if you see inconsistencies.
My Experience: On several occasions, a few doctors wanted to take me off continual fetal non-stress tests (NSTs), which wasn't of interest to me. I fought for continued continual monitoring -- as it provided me comfort to be able to hear my baby's heart beat and movements (which I couldn't hear or feel without the machines since she was so tiny). When a doctor said that continual monitoring wasn't necessary according to best practices, I asked to see a copy of the clinical practice guidelines. Although the guidelines were never provided to me, I was able to negotiate and engage in shared decision-making, after many discussions. Together, my doctor and I decided that I would transition from continual monitoring to NSTs four times a day with Doppler readings in-between.
As a family member or a friend of someone who is hospitalized, you innately trust that hospital personnel are doing the right things and acting in a medically appropriate manner (i.e., administering the proper drugs and dosages, requiring visitors to leave the room for certain procedures in order to create a sterile environment, and enforcing proper hygiene standards). From my experience, I found a lack of consistency in many procedures that took place in the NICU. I didn't hesitate to be the squeaky wheel and ask questions. For example:
- Some nurses required visitors to clear our daughter's NICU room to administer medications through her Peripherally Inverted Central Catheter (PICC line), others did not.
- Some nurses told us that we needed to wear gowns, gloves, and masks when visiting during the MRSA outbreak, others did not.
- When the bathroom outside of the NICU was out of commission, some nurses allowed you to use the staff bathroom inside the NICU, others gave you stink eye, and yet others said you were breaking the rules.
Schedule and Participate in a Weekly Meeting with NICU Staff
Tip: Don't be afraid to request meetings with hospital staff to discuss the health and well-being of your baby.
My Experience: We requested a weekly meeting with the neonatologist nurse practitioner to discuss our baby's health status, as well as short and long-term goals. The meeting had a set-time, which was really valuable. We didn't have to track down a distracted and over-worked nurse practitioner for the meeting. On most occasions, the nurse practitioner came to our daughter's room at the designated time prepared and ready to provide an update, unless there was an emergency situation. Having a scheduled meeting helped us gain a full picture of our daughter's health, clear-up any "he said this, but she said that" confusion, and prepare for her homecoming. In addition to these weekly meetings, we also scheduled a meeting with the NICU Director about the MRSA outbreak, including personal hygiene and sanitation issues.
Police Hospital Personnel and Visitors for Proper Hygiene
Tip: Use the Department of Homeland Security's "If you see something, say something" public awareness campaign to address safety issues in the hospital and the NICU. If you see something that makes you uncomfortable and may compromise the health and well-being of your loved one, then say something.
My Experience: My husband and I policed hospital personnel and visitors for following proper hygiene standards. For example:
- If we happened to see someone walk into the NICU without washing their hands, we asked them to return to the sink for a good washing. We ended up scolding visitors, ob-gyns, and other hospital personnel for not washing their hands.
- When my daughter was in isolation and a hospital worker entered her room without a new gown or without changing gloves, we said something as soon as the staff member entered the room.
- We scolded a respiratory therapist for taking my daughter's chart out of the room for an unknown period of time and then returning it. We were concerned that the chart could have accompanied the therapist to all of the other NICU patient rooms.
- When we saw more than the maximum of two visitors in a patient room, we asked if NICU policy had changed.