Over the past few weeks, I have had the opportunity to witness patient engagement in action through friends. In this post, I wanted to share how people are taking an active role in their own health and healthcare. I also have three friends who are caregivers for their husbands. They are advocating, coordinating and helping to ensure the delivery care is safe, compassionate and coordinated. It is encouraging to me, to see engagement in action. Let’s take a look at each!

Meet Michael

Michael is an active man in his mid-60s. He has been healthy his entire life and loves music, the sun, and the ocean. He is a naturalist and watches what he puts into his body. He eats a plant-based diet, exercises and has a good outlook on life.  Three months ago, he found a pimple in his right ear. He watched it for a while, but when it did not go away, he showed his wife who quickly made an appointment with a Dermatologist. The Dermatologist removed the pimple and sent it for a biopsy. Michael went to the dermatologist for a follow-up and learned that the biopsy showed squamous cell carcinoma. In addition, the pimple had grown in size which alerted the Dermatologist that the case was more complicated than she could handle. She arranged an appointment with the head and neck team at the University of Miami as she felt this would be a better fit for this situation.

I am friends with Michael’s wife who knew I had gone to the University of Miami Sylvester Comprehensive Cancer Center for care. She called me to let me know what was going on. We talked, and I shared things that I thought would help them prepare for the appointment. My friend asked me if I was open to going with them as they were afraid of what they were going to hear. I told her I would be glad to go with them for support.  The appointment was set for 9:30 am the next day. We left at 7 am and made good time getting to Miami and found the Lenner Center without any problem. The Lennar Center is one of the Universit of Miami newest satellite facilities and is beautiful. The Center is state of the art and uses a combination of technology and customer service which makes the process streamline and efficient. When we entered, we were greeted by one of the registration staff who was at a kiosk and asked if we wanted to register. Michael stepped up and went through the registration process, paid is out of pocket cost with his credit card and answered the questions that were needed. Once done, we were told to move down the hall to where we would wait for the Ultrasound he needed to get. We just about sat down, and the tech came out and called Michael in for the test. As we sat there, the wife shared her fears, I listened and gave her support. Michael came back, and the tech said that we could go upstairs to the 2nd floor to see the doctor. We made our way, and within a few minutes, we were called into the Head and Neck Specialists. The physician assistant came in and talked to Michael and his wife about his health history and what brought them to the doctor. Jackie, the wife, told the PA that Michael was supposed to have surgery the following week. This had been arranged by the Nurse Navigator who the Michael had been working with to help get ready for the appointment. She was efficient and helpful in explaining the process to Michael and his wife. The Dermatologist had talked to Dr. Civantos who was a Head and Neck Surgeon and asked him to fit Michael in as she was worried about the lesion as it was growing. The doctor agreed to schedule him for surgery before he left for vacation. Dr. Civantos came in and greeted everyone. He took a look at Michael’s ear and said that this was more than he expected and was not sure he could arrange everything before he left. The wife got very upset and begged him to try. He knew this was a fast growing tumor and said he would do his best. He mobilized his staff to put the plan into motion. It was amazing to watch. In the meantime, the doctor examined Michael and showed him and his wife the MRI and the other test that had been done. He explained what he saw and what he planned to do. He took a lot of time explaining the procedure and answering Michael’s questions. It was evident that Michael had looked at his scans and had done research on the internet. He was engaged and not afraid to ask questions, and gently challenge the doctor about the procedure. The doctor recognized Michael’s knowledge and took his time to explain the risks, benefits, and importance of doing the process in a way that would lower his risk of reoccurrence. It was my impression that Michael, was slowly coming to terms with what had to be done and the concern that it is done as soon as possible. The doctor gave him the opportunity to get a second opinion and told him he would not hurt his feelings if he wanted to wait and get a second opinion. He wanted Michael to feel comfortable in the decision he made. His team reported in from time to time with questions they had. They were able to get everything set up so that Michael could have the surgery the following week. It was a world wind for Michael and his wife as there were a few things they had to do, but the operation took place as scheduled and Michael is doing well postoperatively. He is healing and is starting the next stage of the process. It looks like he will only need radiation as none of the lymph nodes were positive. Michael and his wife are much relieved that the procedure is over and none of the adverse complications arose that could have occurred. They are healing, working with the oncology team to plan next steps and getting back to their lives

Meet Mary

Mary is a friend who I met at my community pool. She is a 55ish-year old woman who has post-polio syndrome.  She is amazing and has not let her disability impact her life. She has been an inspiration to me since I was diagnosed with my brain tumor. As I watched her over the years, she gave me support and motivation to overcome my challenges. She wears full leg braces along with crutches to walk. She has hand controls in her car that enables her to drive. She is active, energetic and is very in tune with her body. Recently she told me that she feels like she is getting weaker and having more pains that impact that are starting to worry her. She said she always has some pain, but she said this was different and she was worried. As a post-polio patient, her body does not work the same as ours. For many of us, the more exercise, the stronger we get, but in her case, she has to be careful as the more she does, she can regress, so it is a delicate balance. Mary had a doctor who specialized in post-polio syndrome but had recently retired. She was trying to find a new doctor that she could talk to about her symptoms. She found a doctor at the University of Miami, but she was nervous to see her as she has not had good luck with new doctors. She had an appointment for July 20th and asked if I would go with her. I agreed, and we went down on the appointed day. Mary was nervous, but had made some notes should she felt prepared for a visit. After going through the registration process, she was called in to see the doctor. The doctor popped her head in the room and asked if Mary minded if her student could do the assessment and then she would be in. Mary agreed, and the student came in to interview and examine Mary. Mary allowed me to be in the room with her. She explained her symptoms and what was bothering her to the student. She was able to explain things in detail which helped the student take notes. Once done, Dr. Lauren Shapiro came in.  Dr. Shapiro is a Physical Medicine & Rehabilitation specialists and explained that she had had experience with post-polio patients when she did her residency/Fellowship in Boston. This helped Mary relax.  Mary went through her list again, and the doctor then examined her. As she did, she noted the pain in the hip that Mary spoke about and wanted to get an x-ray. Because post-polio patients do not have good muscle tone, sometimes the joints can dislocate. The doctor took time to explain what she thought was going on. She said she thought Mary could benefit from physical therapy to help build up her core muscles as they were very weak. Mary also mentioned that she had gained a little weight and could this be having an impact on her overall condition. The doctor discussed her diet and agreed that in her case she needed to watch her weight, but overall she was doing well. She felt the physical therapy was the most important things at this point.  The doctor told Mary that she would like to see her annually or more often if needed. It is important that she is followed closely. She said she would call her with the x-ray report. Mary left the appointment feeling better. A few days later, I asked Mary if she had heard from the doctor about her appointment. Mary said no she had not heard and ‘assumed’ that everything was fine. I recommended that she call her and not assume anything. We also looked at the University of Miami website, and I showed Mary how to set up her patient portal so that she could access her test results in case she needed them later.  Mary let me a few days later that she called the doctor and found out that the x-ray showed some arthritis and there was evidence of a former dislocation (which we knew). Mary thanked me for advising her to call as she felt better hearing the report from the doctor. She is waiting to start physical therapy and feels relieved now that she has a doctor who can help her maintain her health to it fullest.

These two examples highlight the story of patient engagement and how being a part of the team is essential. Having someone with you when you see a doctor is important. In both cases, I was able to remind both of my friends of things the doctor said that they missed or did not consider. Having a second/third pair of eyes and ears is important when your health and health care is in question. Today, doctors and other members of the healthcare team welcome this involvement as they know it will result in better outcomes.

Meet Three Caregivers

As I mentioned above, I have three friends who are acting as advocates and caregivers for their husbands. Pat, Cynthia, and Linda have been mentors for me throughout my case management career. They are each putting their nursing and case management skills to work as they care for their husbands who have been stricken with various complex medical conditions. Each has found support by keeping friends and family updated via social media, texting, and Caring Bridge.

They find support from their family and friends as they work through the challenges their husbands are facing. They are active participants in their husbands care and are learning each day the importance of communication and care coordination. They make suggestions and offer solutions to the challenges as they arise. Each of these women is retired from active practice, but found their voices and are part of the care team caring for their respective husbands. I am so proud of each of them and love to read the post they share about what is going on, how their husbands are doing. The notes are informative and illustrate the clinical skills each have as they explain and analyze what is happening.

They are working closely with the healthcare team to make sure each member understand what is going on and that their husbands are taken well cared for. They are advocating and are helping their husbands work through each challenge they face with dignity.  As a result, each man is getting safe, effective, coordinated healthcare to meet their individual needs. When a problem arises with insurance they are right there to tackle the challenge with expertise and knowledge. Each of my friends is making sure that the healthcare team knows their husbands, not as patients, but as the strong men they are.

As a friend, I keep in touch and lend support where I can. Their stories continue to reinforce that every patient needs an advocate when they are thrust into the healthcare system.

In closing, I hope these examples show you the importance of being an engaged person in your health and healthcare as it truly helps to ensure the process works.

If you have an experience you would like to share as a patient or a caregiver, please feel free to enter your story in the comment section or email me directly at allewellyn48@gmail.com

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