
Recently, I had to practice what I preach on a terrifying ER visit and hospital stay with my hero, my darling dad. My mother and I were up on our feet all through a night and the following day without a wink of sleep, worried but trying to stay calm and rational so we could get my father the care he needed.
The medical details were harrowing, and there were many moments of confusion, moments where I thought – “if this is happening for me, with over 26 years of navigation experience, what must it be like for someone equally shell-shocked, but without those tools?”
Because of my experience helping people navigate, here are some things that helped speed and smooth the process:
1. As soon as it was a civil hour, I got in touch with my father’s primary care doctor, who also happens to be his cardiologist. Instead of relaying my recollection of tests results and details, I gave him the login to my father’s MyChart so he could see them for himself.
2. Once he saw the facts and began guiding me about what to ask for, I found the chief resident and asked him if he’d mind speaking to my father’s doctor. Though the young man was busy and stressed, he got on my phone and had the conversation.
3. I learned the names of every nurse, doctor and staff member who attended to my father. I took notes in the Notes application on my phone and recorded all that information. That way, when I asked for something, I could call the person by their name.
4. I never lost my temper or raised my voice. Inside my head I was thinking “can you give him his f*&*ing antibiotic already?” but I said, “I’m so sorry to bother you and I know you’re really busy, but my mother and I are so worried about my dad, and his doctor is urging us to keep asking about his antibiotic.”
5. I made sure to show every doctor who treated my father a list of his medications. And I always mentioned his allergies.
6. I never assumed that one doctor had spoken to another, even though my dad had a care team. I always made sure to tell each doctor what I had heard from others because I know how busy people are in hospitals.
7. Once my father was in his room, both before and after the emergency procedure he had, I learned who was on duty and made sure to be around for doctors' rounds and nurses' shift changes. During rounds, I asked doctors to make sure that his meds were coordinated and offered the phone number of his primary care doctor.
8. When I brought in water for my father and my family, I always brought some extra bottles over to the nurses' station. On Sunday morning, I brought a dozen bagels and cream cheese for the nurses. They work so hard and deserve that kind of thoughtfulness.
9. I checked my father’s labs on his MyChart daily and asked the nurses to print out his medication schedule for me so that I’d know what to expect and could share it with his primary care doctor to make sure that his regular medications were coordinated during his hospital stay.
10. Instead of texting people who wanted to be kept informed one-by-one, I asked one person from each group (the cousins on my father’s side, for example) to reach out to the rest of the group.
11. I asked people not to call his phone or my mother’s phone. Texts are easier to field and after a procedure with intubation, too much talking is not good for anyone.
12. Because my father is hard of hearing, I asked every person who came in to speak slowly and lower their masks. Even with hearing aids, it is so hard to hear in a hospital room with all the beeping and background noise. While not every patient will have this challenge, it is well worth it to let the professionals who come in know of any challenges. It’s a strange feeling to be lying in a bed and having people come and go. Humanizing the communications is the best thing to do and an advocate or navigator can really help.
13. I stayed calm and reassuring. Anxiety is common in a hospital setting. Hospital stays feel like a time warp and as more testing happens and more information emerges, understandings and expectations can change quickly.
I hope that some of these notes from the hospital are useful.
It all comes down to respectful yet persistent communication and it can make a huge difference.
