Observations from being “the family.”

It’s been a trying week for our family. You learn things when your people need healthcare. It’s an entirely different perspective. I am doctor; I’ve been a patient, but this was the first time being “the family.”

Without going into details, (see her guest post), my wife Staci came to need the best that American healthcare has to offer. Let’s say it was a non-preference-sensitive decision to proceed with a major surgery.

As I write this, things are stable and well here at home.

Here are some observations of the experience:

People in the business of delivering healthcare are good people. Early on in the course, before it was known we were doctors, people treated us with compassion and kindness. Simply put, our caregivers delivered care. After it was known we were doctors, the experience changed—that may not be right, but it is fact.

Although there was a true need for surgery, the surgical approach was preference sensitive. In this case, there were multiple surgeons available, including the doctor on call, a specialist in group A, and a specialist in group B. These were not insignificant choices because the three surgeons approached the fix in three different ways. This is tricky; how one chooses in these situations highlights one of medicine’s great challenges: picking the best doctor for you. Dr. Kevin Pho recently wrote about the thorny topic of rating doctors in the USA Today.

Here I am an experienced doctor who has worked in the same medical community for 18 years, and I truly didn’t know. Ultimately, we relied on another doctor, one who was in the field, to sort it out for us. She was careful with her words; no, she didn’t speak down about any colleague, but her preference was clear.

Now that the surgery is over, and successful, it’s clear we made the right choice. Our surgeon was reserved but confident, clear of words, respectful and he performed skillfully. An aide came in the night before surgery and told us that our chosen man would be her third choice. We stayed with our pick. Now that I have had time to digest the experience, read more about the surgeries, and talk with our surgeon, it’s clear why an aide might have thought our surgeon was the third best option.

Another observation comes from the anesthesia experience. Our anesthesiologist texted me before the surgery and asked if he could do the case. We had worked together before and I think highly of him, as both a person and doctor. Assessing things after, what most stood about his care was not his skillful delivery of anesthesia, but his compassion, delivered through words and deeds while doing his “job.” Remembering how he talked, and cared, brought tears to the eyes of his patient. “It matters,” was what Staci said about the way we treat people.

Yet another new perspective came from the experience of waiting in the OR waiting room. When they take your one soul mate away and you get to go sit in a chair in a big room, thoughts pop to mind. Big thoughts. (I could say existential, but I won’t.) Life flashes before you. As in: what was, and, what might be in one hour. Then a text message came: “the intubation went smoothly, incision made, everything is stable.” Those words were huge. A pressure was relieved. Then another text: “getting ready to close; still stable. See you in 15-20 minutes.” Again, tension was relieved.

The thing I learned about being a family in the waiting room is that although everything is “normal” for us as caregivers, it’s not so for the families. I’m going to work on doing better at communicating to families out there waiting for their loved ones. EP studies can be long.

A few other little things: Loud voices out in the hallway of hospital wards are really disruptive. The speed with which transporters whip beds around matters. Patients who are in pain or overcome with nausea are especially sensitive to car bed sickness. Speaking of transporters, conversation is one thing, but noting that what he sees most of in our emergency room is people with blood clots, is s a little spooky when one has a surgical disease.

Me and John on our last walk before surgery.
Me and John on our last walk before surgery.

I don’t wish illness on any caregiver’s loved one. But when it happens you learn a lot. #perspective.

JMM

4 comments

  1. Insightful comments ! Hope “all” are healing well . Question : why does it take a ‘face to face ‘ experience to see these things? Why not random 1:1’s with patients & family members to discuss ‘likes & dis likes”? Occasional focus groups? And, IMHO, as mature ( read : older) health industry product /marketing/ scientist — be careful do those questionnaires . Often, not well crafted . Often , read by PR/mkt research firm employees. Often, not followed up.
    Thanks for the case story. Jack .

    1. This is along the lines of what I was thinking as I read this. Imagine the difference in health care if understanding these issues was part of the culture from the beginning. I work in a completely different field, but part of what we teach our young is the idea of the client experience (here substitute the words “patient” and “family” for “client”) that says what we do for the client is only a part of it. A little empathy goes a long way toward a much more positive experience.

  2. Your comments are one more reason for pushing our system for a PAC (Patient Advisory Committee) but I can’t get any traction. How many patient would appreciate texting from the surgical suite? And there are software apps out there that help with that, to take some of the onus off the staff. As the MedX epatients are fond of saying- At MedX the epatients emphasized that, while we all have the potential to BE patients, we are not all patients (or family). Not until we are thrown into the arena can we truly understand.

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