Everywhere I go, healthcare organizations are proclaiming their commitment to patient-centeredness. The problem is that most of their staff and processes aren’t in step with the lofty proclamation. To be truly patient-centered means that you filter every decision, every remark, and every process through the lens of the patient and ask, what does the patient need? Unfortunately, this doesn’t happen. In spite of the best-laid plans, I’m finding huge gaps that make me realize, as an industry, we have a long way to go.
I’ve had three very specific experiences in the past week that remind me of the disconnect between the “stated” corporate goal for patient-centeredness and what really happens on the front line. My mother was diagnosed with lung cancer last week. You can imagine that it’s been a shock for my entire family. Trying to help my mom adjust to the diagnosis and navigate a series of tests and appointments has been an eye-opening experience. She was discharged from the hospital two Thursdays ago and had to wait until Wednesday the following week for the PET scan to determine if there are metastases to any other organs. This, of course, is vital information in planning next steps and treatment options. After the scan, we had to wait until Friday for an appointment to learn the results. Each appointment was 75 miles roundtrip, with wheelchair, portable oxygen, etc.—you get the picture.
Finally Friday arrived, and after waiting on pins and needles for over a week, we were ready to learn the results of the PET scan. I made the trip and valet parked with a friendly valet who got a wheelchair, transferred the oxygen, and assured my mom was safely seated. We stopped at the information desk and asked for directions and were escorted the eight floors to the pulmonology clinic. So far, I was impressed with the attention to detail and the warm welcome. I then wheeled my mother to the registration desk where she gave her name and informed the receptionist that she was there to see the doctor and learn the results of her PET scan. Instead of an affirmation, we got, “What is your name again? Hmm. How do you spell that? Hmm. We don’t have you on the schedule. You’re name is not anywhere. In fact, the doctor isn’t even here today.” I thought my mom was going to cry. She was scared, physically frail, and fatigued from the trip. I showed the receptionist the printed discharge instructions listing the appointment. She looked at it, handed it back, and said, “Oh, the hospital must have made that appointment and didn’t tell us. He’s not here today.”
If this was you, what would you be feeling at that moment? I felt the patient (my mom) was being discounted. That her needs weren’t important and that the hospital and clinic’s disorganized approach to scheduling was now our problem. Not only would it mean another trip, but it would require more agonizing delays waiting for information that was about to shape our future. My mom felt abandoned, as though the great reassurances she had been given at discharge were deteriorating in value.
I am, and always will be, a staunch patient advocate—particularly where my family is involved. I simply looked at the receptionist and calmly informed her that we would be seated in the waiting room and would not be leaving until a physician (anyone would do) gave us the results of the PET scan. I had no intention of leaving and having my mother—or any of us, for that matter—wait another day for the results. I reassured my mother that everything was under control and that the staff would have the doctor there soon. (Yes, I was doing service recovery for them, but my mom’s emotional state was the most important thing right then.) We waited about an hour, but the very apologetic doctor did appear to meet with us and give us the results. He was very thorough, considerate, and attentive to my mother, just as he had been in the hospital. He explained the next steps and outlined how the process would go.
The good news is that there are no evident metastases, so we can proceed to the next treatment decisions, but you can see from this example that our experience could have gone very differently. Had I not spoken up, we would have been sent home for another grueling wait. I shudder to think that this happens more frequently than we know. After all, for every one person who speaks up with a complaint, there are fifteen others who remain silent to the organization but tell others.
In a truly patient-centered environment, every person must filter words and actions according to the patient’s needs first. In this case, if the receptionist had put my mother’s needs first, seeing the scheduling glitch, she would have said, “Please have a seat and I’ll be back in just a few moments.” From there, she would have done whatever was needed to fix the scheduling issue without even making us aware of the problem. Telling us that the discharge instructions and appointment were made by the hospital and not the clinic did nothing to instill our confidence. It just made both the hospital and the clinic look disorganized. When the hospital and clinic operate under one physical roof, the consumer has a right to expect that the left hand knows what the right hand is doing. As an industry, we have to do better. This starts by coaching the frontline staff on how to respond to numerous, difficult situations to build their confidence and skills. It also means that when they do learn to handle situations by putting the patient’s need first, the leaders must recognize their efforts and support them in critical thinking. This story is a prime example that the patient experience is only as strong as the weakest link. Learn more about disease effects at www.mesotheliomahelp.org/mesothelioma/.