Over the past few weeks, I have been helping a few friends navigate the healthcare system as they have had challenges that left them confused, frustrated and worried.  As I look back on each situation, I realize the missing link in each situation was effective communication. As a nurse leader I know how important effective communication is and a competency I need to work on every day. Healthcare communication is challenging as the system is complex, fragmented and different for each stakeholder. Here is what I mean:

Email vs. Live Communication

Today, we are encouraged to communicate with all members of the healthcare team, payers and others via secure email or the patient portal. In theory, this is efficient, but it also eliminates our abilities and the patient to gain answers and to communicate effectively. Talking directly helps us ask questions in real-time and get answers that allow us to better process the information.

A friend shared several emails he had written to the contact he was assigned to a Benefit Coordination Resource Company. This company is not the insurance company, but a liaison between the insurance company the members and providers. They are in place to assist members when they have issues with their benefits. My friend’s letter was well written, explained the issue clearly and had a specific request that would help him and his wife handle a challenging situation and prevent serious complications.

My friend’s wife is a juvenile diabetic who has an implanted diabetic pump which has helped her control her sugars. Overall she does well but recently has been having low blood sugars to the point of her husband finding her in an unresponsive state. Years ago, she had low blood sugars when she was pregnant, but since getting the pump, she has been well controlled. During the pregnancy, she had a glucagon emergency kit that the husband was able to use to revive her. As she has been stable, they have not had the kit for a number of years. Due to the recent episodes of low blood sugars, they decided to get one to have on hand in case of an emergency.

Over a three week period, my friend wrote emails, talked to local pharmacists at the drug stores they filed their prescriptions, and made several visits to the PCP to obtain the glucagon emergency kit. My friend and his wife seemed to go in circles until the terms ‘medical necessity and prior authorization’ were interjected into the conversation by a friend who was a pharmacist. The pharmacists recommended they ask the doctor for a letter of medical necessity so they could share it with the Insurance Company. The member called the doctor and asked for a letter of medical necessity so they could submit as part of the prior authorization process. The letter was written, taken to the local pharmacy, sent to the insurance company and suddenly the glucagon emergency kit was available. Following these events were frustrating as the solution was something that each person involved should have known. Giving a diabetic a glucagon emergency kit should be standard practice. It is a lifesaving resource that any healthcare professional should recognize. Having live communication with a person could have helped this situation. Also, getting a letter of medical necessity to assist with the prior authorization should be standard procedure today.

Who’s in Charge of Care Coordination?

Another friend was scheduled to have an Endoscopic ultrasound (EUS) to rule out a mass on her pancreas. She was referred to a GI specialist who was part of her Medicare Advantage Plan. When she got the referral she looked the doctor up online and was not impressed with the reviews. She asked her primary if she could go to another doctor as she was nervous to see this doctor due to the reviews. The ordering doctor told the patient that this doctor was the only doctor who did the procedure in her area. The patient decided to go with the flow and get the procedure done by the recommended doctor. The patient made an appointment to meet the doctor. On the day of the appointment, the weather was bad and the doctor decided not to travel to her east side office so the Nurse Practitioner saw all the patients in the doctor’s absence. I attended the appointment with my friend. I thought the NP was personable and explained the procedure in a manner me and the patient could understand. As we were leaving, the NP told us the doctor would meet the patient at the hospital on the day of the procedure. The patient was directed to the scheduling desk. Here she signed many papers, including the informed consent.

On the day of the procedure, the patient arrived and was prepped for the procedure at the hospital. She was taken to the assigned operating room where the procedure was going to be done. Several people were in the room and she looked around to see if the doctor had come in. The patient waited but was given medication to sedate her and the procedure was done.

When she woke up ad her vital signs normalized, she was discharged by the nurse and told to see the GI doctor in one week to get the results. The procedure took place on a Friday. The patient went home with a friend as she lived alone. Over the weekend, she had pain which increased over the weekend and on Sunday night, she went to the ED. She was admitted and put on IV antibiotics. On Monday the GI doctor, who did the procedure, came in to see her and went on like she knew the patient. She said we met at the office. The patient said, no “we never met, you could not get to your office the day of my visit so your NP explained the procedure to me. I thought I would meet you before the procedure, but you did not introduce yourself the day of the procedure. This is the first time we are meeting”.  The doctor shook her head in a confused manner and said she was going to have a few doctors see my friend try to understand the cause of the pain and left the room.

Over the next few days, several doctors came in and out. There was a surgeon, an infectious disease doctor and the hospitalist who was acting as the managed care physician. The patient was in the hospital for four days and improved. She had a CAT scan and an Ultrasound done. Each doctor saw her at various times and seem to contradict each other when my friend ask questions as to what was going on. She was not assigned to a case manager but one did visit her at my request. The patient was discharged on day four. The patient wrote a group text to her friends letting them know she was discharged and would be going home. Her text summed up her experience: What the tests showed was not conclusive so they have decided to wait and see. I will follow up with the GI doctor and my primary doctors. What is sad is that I don’t know anything more now than when I was admitted. Except I did not have an infection which was what they were treating me for!  

On the appointed date, I accompanied the patient to the GI appointment. Prior to the appointment, the doctor’s office called my friend and told her that the Doctor would not be in the office to see her, so the NP would see her and did she want to change the appointment date. My friend said no, she would keep the date as she was anxious to get her results from the procedure and the pathology report. She did not care if she saw the GI doctor as long as she got her results as she was seeing her primary later in that week and wanted her to have the results. We saw the NP who went over everything and gave the patient the results. We left the office after my friend told the NP she was not happy with the GI doctor and would not be coming back.

The experience was disappointing to me and it showed that there is really no system in place to coordinate care or involved the patient as part of the team. What would have turned a bad situation into a teaching moment is the nurse case manager bringing the team of doctors together to discuss the case and have one of them (the GI Doctor who did the original procedure) talk to the patient prior to discharge to review everything that had occurred, share what the groups impressions were, what they recommended the patient to do at this point and answer any questions my friend had.  Doing this would have given the patient information that allowed her to process what happened and understand the plan of care going forward. This is what we teach, but it is lacking in actual practice I am sorry to say.

Preparing People to Hear Information

The last case is about a friend who recently had a routine colonoscopy. Several polyps were removed, but one was too large to be removed during the procedure. As a result, she was referred to a surgeon. She promptly made the appointment and saw the surgeon a few days later. As she went alone, she asked the doctor if she could record the conversation and the doctor agreed. I was able to listen to the recording a few days later. The recording was an eye-opening conversation where the doctor calmly shared what he was going to do and what the patient might expect depending on the pathology from the polyp. At each point of the explanation, the patient expressed her surprise and shock as to what he was telling her. She clearly thought this was going to be a simple procedure but in fact, it was going to be major surgery with significant repercussions depending on the pathology report.

This is another example of how important thoughtful communication is. Here is my impression:

First, I applaud my friend for recording the conversation and the doctor for agreeing to this. Having the recording allowed her family and friends to have a good idea of what would happen and be able to support her during this time.

I thought the doctor did a good job explaining the procedure, but the shock on the side of the patient showed that she did not understand how complex and involved the procedure would be. What would have worked better to prepare the patient for the surgical visit would have been for the GI doctor to tell the patient that she should take someone with her to the appointment with the surgeon? Having a family member or friend would have allowed her to be supported when she got this news. The surgeon’s office also could have recommended someone come with the patient. Doctors need to train their front office staff to suggest to the patient they bring someone with them to their appointments.  This might have made the appointment more efficient and provide support for the patient when they are given the news as to what the doctor was going to do.

Having the recording of the appointment allowed my friends family and friends to hear what was going to happen. She does have a lot of support and it is our hope that everything turns out to be negative. As a result of the recording, my friend’s husband has requested off when she has the procedure and she has people helping her through the process.

Today, patients are being asked to be active participants in their care, but to do this, they need support, education, and advocacy. They need information and help to process the information they are given. I hope you will keep these examples in mind when you or someone you know enters the complex world of the healthcare system.

WE CAN and MUSU DO BETTER!