Caregiver Thought Leader Interview:
Gary Barg: Although members of our loved one’s care team can have many years of experience, we, as family caregivers, enter the system through a metaphorical phone call in the middle of the night. Dad fell. The tests came back. There has been an accident. All of a sudden, you walk “through a looking glass” of acronyms you never heard before. I think it is not an even playing field when it comes to family members being asked to deal with medical, insurance, and financial decisions. What are we supposed to do?
Randy Gebhardt: We have done quite a bit of research, both with the patients who are struggling and the family caregivers who are trying to help them. What they tell us is that when they get that call in the middle of the night, or however it happens to them, they feel they are in the movie The Wizard of Oz. They get sucked up into a tornado and dropped into a dark, scary forest. We actually had people give this analogy to us.
They tell us that they feel the insurance companies and medical industry have invented a strange terminology and a world intended to leave them in the dark. And that is exactly why they need the kind of help that caregiver support can provide to them.
Gary Barg: What you do as a part of Quantum Health, which is an organization utilized by major employers to do care coordination for their own employees, is impressive. But if you are not with a major corporation with a good coordination department, you are on your own. Was CarePartner started to help those of us who do not have this support?
Randy Gebhardt: Exactly. We have been helping people who are employed by self-insured employers for 15 years—helping them coordinate their care and navigate the system of physicians, insurance, or medical claims payers. The one thing we saw was that there were large blocks of patients and families who could never get this kind of assistance and who probably need it most. That is primarily the folks who are on Medicare. It is just very confusing. We created CarePartner in order to provide care coordination and patient advocacy to those folks.
Gary Barg: So, I step into your Wizard of Oz world, which is a terrific analogy. All of a sudden, people are saying things to me and showing me mountains of paperwork and I don’t understand any of it. I can reach out to CarePartner and ask for help? What would you do for me?
Randy Gebhardt: The family caregiver, and sometimes the patients themselves, will call or email us directly. Sometimes we get calls directly from physicians that the family has told them they have the CarePartner Patient Advocacy to support them. Then the first job for us is to dig to the root problem. Sometimes, it is medical or confusion in the healthcare system or lack of connection between providers. Other times, it is billing or claims issues. And many times, those things intertwine. One of the really key things we have learned with CarePartner is when billing, claims, and coverage issues intertwine with healthcare, it all becomes very hard to manage.
So we start digging. We figure it out. We make a lot of calls. And we try to get to a solution. Basically, walking the family through a solution is what our job is.
Gary Barg: So, where do I as a family caregiver even start?
Randy Gebhardt: Years ago, I had a friend whose parent was in the hospital and she was so frustrated. There might have been three different physicians involved. They each would show up at different times. As a family member, she would wait and wait to hopefully talk to one of the physicians. She would finally have to run down the hall to the bathroom. While there, the physician would come and go. Her parent was in the hospital room on medications and had no idea what they were just told.
My friend said she was going to get the administrator of the hospital to put all those doctors in the room so there could be a meeting. Basically, she said that she was going to clunk their heads together. I told her that was not going to happen because those physicians, generally, do not even work for that hospital and that administrator does not control them. That is why you need professional care coordinators. We are not going to get them in one room, either, but we understand the business and the strange terminology. Frankly, we can cut through the flack thrown in the air, sometimes by various people, and figure out what is really going on. We get people to do what they need to do to get the patient to resolution.
Gary Barg: It also occurs to me that so many times our loved ones will not listen to us. But, if there is a professional, a care coordinator, in the picture and you are able to talk to our loved ones, they are more likely to agree with you than they are with us, or the sons or daughters, or wives or husbands.
Randy Gebhardt: That is a fantastic point. We see that all the time. Often the parents are from a generation in which they really do not want to receive assistance. They certainly do not want it from their children. They are appreciative, but they really do not want to ask. They feel like they are being a burden and they often do not want to share information.
We have run into many situations where the parent was not sharing all the information with the children. Sometimes, a parent will tell one child and instruct them or order them not to tell the other siblings. This causes tremendous family strife, so a big part of our job is actually negotiating the family issues.
We have had many situations where we organize a family conference. We get all the siblings on the phone after we have talked with Mom and Dad and we know what the situation is. As a go-between and advocate for all parties, we organize a conversation. We put out the issues that need to be decided and clarified. We are a facilitator of a decision process. Once the decision is made, we help Mom and Dad understand and we help execute the decision.
Gary Barg: To have somebody step in and say the things you cannot say to your parents, for the most part, is worth its weight in gold.
Randy Gebhardt: And the parents appreciate it, too, I think. It is awkward and embarrassing sometimes for them. They will tell us things as a professional and their advocate. They know we are going to help them, but we are not going to be in their family. They will tell us things they are probably are not telling their children. And they will listen to us in ways that they would not listen to their children.
Gary Barg: No question.
Randy Gebhardt: I hesitate to say this, but I think a lot of people who might hear this will chuckle. Sometimes, the clunking of the heads is not just among the doctors and insurance companies. Sometimes, it is within the family.
Gary Barg: What would be the one most important piece of advice you would like to share with family caregivers?
Randy Gebhardt: They do not have to go it alone. Particularly with Medicare-aged parents, we start to get into very complicated, multi-faceted issues with multiple physicians who are not talking to each other. There is a growing industry of professional advocates who can work on your behalf, who understand the industry, and can take that load off of you. They coordinate, facilitate, and manage the process so you can get back to spending time with your parents and being a family.
Listen to the Audio Interview