Danielle is the caregiver for a client of mine. She calls me often to sometimes just chat and other times to vent about her frustrations with the healthcare system. She has spent the last four years assisting her partner receive the care he needs. It hasn’t been easy at times. Her partner has needed multiple surgeries and after each were a series of complications.
She has had much time to examine the system. She has three main frustrations. The first is lack of communication from the medical side especially with follow up. This includes doctors, nurses, homecare services, medical supply businesses and office personnel. One recent experience went like this. Her partner needed a surgery scheduled because he was getting worse again. The doctor had to tell the office when to schedule. The office was called once or twice a day. Finally, at the end of the week, I called and was told “Oh I forgot to call them with the date!” A week had gone by with increased symptoms, anxiety, tears and explosive frustration.
The second frustration is the inability of medical professionals to understand the need for education and follow up as to whether there are questions or concerns. She feels there is little importance placed on whether a patient understands new information from medication side effects, to procedures, to living with a chronic illness. Part of the problem is offices don’t have anyone designated for educating clients. Doctors/NPs just don’t have the time. She gets the line, call if you have any questions. She doesn’t hold much faith in getting calls back.
The third and probably most frustrating is the lack of coordination among specialists, primary care,nurses, home care and facilities. She feels that they are not on the same page and don’t bother to find out what anyone else has done. Treatment plans are not developed together. Follow up is poor. Communication is limited if at all. The worst is trying to get a call back when a crisis arises. It becomes difficult to get information. Her belief is doctors can no longer do it alone and they have to realize that. To her , it means they have to put systems in place that actually take in to consideration the patient and their life. What a concept!
Danielle and her partner have had to change surgeons because information was slow and phone calls were not answered. If a call is not returned the same day by someone in the office, it becomes stressful and frustrating. Calls are only made when symptoms are beginning to escalate and need attention. It helps even to get a call saying the doctor is aware and he/she will call. Medical offices have to realize that information is the best stress reliever.
The excuse that offices are busy doesn’t fly with Danielle. I agree it is a shallow excuse. She always inquires as to the best way to communicate whether phone, page, email or text. Some offices have addressed this issue. One aspect of Mayo Clinic that I like is that most doctors respond in a timely fashion. It is the culture of the organization. And there are other systems that respond well. However, it is not mainstream.
Danielle believes offices need social workers to take care of followup issues, explain procedures, speak with families and make sure people feel they are getting heard. I was reminder of years ago of how we did have social workers in the office. Unfortunately now, insurance doesn’t pay for that. I wonder if ACO’s are going to address this issue.
Danielle is not alone in her frustrations. She has changed how she interacts with any medical professional. She starts a full court press with any medical office the minute her partner’s symptoms begin. She knows it takes time to get a response. Her goal is to keep him out of the ER. It worked this time but not with much anxiety and tears. Being an empowered patient/caregiver is not any easy task.