If you are having a tough time navigating medical care, patient advocates can help! Last week I was talking to a friend who recently tore the meniscus in his right knee. He was informed by doctor’s office personnel that he needs surgery. He had a few questions, so he requested a call from the doctor before he scheduled. The response: This is standard care for this type of injury and you don’t need to talk to the doctor. He’s going to tell you the same thing I’m telling you.
My friend was taken aback. As a former Division 1 college basketball player who continued his career playing Masters Basketball, he’s accustomed to superior medical care. He’s also used to being treated as part of the healthcare team. When I told him his experience was not uncommon for the average patient, he was shocked. He also wasn’t sure what to do next.
After some searching, I found the information for the associated hospital’s patient experience team and sent him a link. Unfortunately, it wasn’t as simple as a single search within their website. It took several tries with several keyword variations. This is also not uncommon. It is unfortunate.
The healthcare system is often hard to navigate. When you feel sick, injured, and vulnerable, it can be next to impossible. That’s when a patient advocate can help. If you have a family member who is capable and available to serve in this role, that is ideal. But many of us do not have that.
So, how do you find an advocate when you need one? If you use a clinic associated with a hospital, that hospital may have an office of patient experience. Sometimes it may be called the office of patient and family centered care (PFCC). Sometimes just using the keywords patient centered care will get you to the proper place. Other hospitals will have someone on staff called a patient advocate. If you don’t want to search online, call your local hospital and ask for the extension for the patient advocate or patient experience office.
Patient advocates may have a degree in social work or nursing, but they are not functioning in the same role as a hospital social worker or a nurse. They are more like your own personal communications team. When you run into an obstacle like the one my friend did, an advocate can talk to both parties and help find a solution that works for both.
They can also help you understand a doctor’s instructions, help you seek a second opinion, and help you sort through different treatment options. An advocate can assist your family in understanding how they can support you. Because they work within the system you are seeking to navigate, an advocate may have many avenues for solving a problem that you would not know about.
Not all advocates work for a specific institution. Some work for state health departments. Others work for independent services. When dealing with long-term care, you may receive similar services from an ombudsman program.
It’s always hard to ask for help, especially when you feel vulnerable. Learning about the programs available in your area when you’re well is a great way to prepare. The Beryl Institute gives awards to institutions and professionals that innovate ways to improve the patient experience. If you are a member of an underserved population, Centers for Medicare & Medicaid Services (CMS) may have a specialized program to assist you.
You are an important member of your healthcare team. It is important that the rest of the team collaborate with you to achieve the best outcome. That includes creating a treatment plan that considers what’s most important to you. In order to do that, the team must share information and treat you with dignity and respect. Anything less is unacceptable.
There is a shift toward prioritizing the patient experience because it has become a significant measure of hospital quality. That means, now more than ever before, patient advocates and patient experience specialists are available to assist you.
I wish this had been true when I was struggling to get a diagnosis for psittacosis and then celiac disease. But I am grateful things are changing. I feel better knowing that when I need them, patient advocates can help!