When dealing with critical illness, it’s easy to get lost in the healthcare maze. Your ability to navigate the system to your best advantage may depend on who is advocating for you.
Some patients believe they are qualified to handle the situation themselves. I did. What I didn’t factor in was the emotional impact of a cancer diagnosis, coupled with pain medication and a huge dose of stress. These are not the ideal conditions under which to advocate for one’s self. Fortunately, I got help.
It seems that most patients with catastrophic illness need help but don’t exactly know what, where or how to get it. That help is typically called a Health or Patient Advocate.
Your health advocate can be a friend or family member, and some medical centers even provide a care coordinator. Essentially, your advocate is someone who helps coordinate the various resources assigned to your care – procedures, tests, prescriptions, and recording what the doctor really said.
Your advocate does not need to be a medical person because his or her responsibility is to be your voice, your eyes and your ears. Your advocate helps by taking notes at medical consultations and remembers the questions you may have forgotten. A good advocate is a physical and emotional supporter of the person who is coping with the illness.
Some hospital systems offer a patient advocate who has access to resources that may be beneficial to you including support services like a nutritionist or physical therapist. They may offer help with insurance claims or disability filings. They can explain medical or hospital practices that are unfamiliar to you, setting realistic expectations or making the experience less confusing or frustrating. And they can help with issues you may have about treatments. I suggest that you take advantage of these services in addition to having your own advocate.
Giving your advocate direction is very useful. Ideally, a health advocate can make your medical appointments, as well as go with you to take notes or assist you physically. Your advocate can assist in organizing your medical records, especially if you are being seen by multiple doctors. Although the doctors try to stay coordinated, if they are unaware of what the others are doing, you are the one who will suffer the consequences. Also, administering medications at home is a serious problem for those on multiple prescriptions. If your advocate can organize and manage your prescriptions, you could avoid a life-threatening situation.
Not long ago, Oprah Winfrey was facing serious health problems and sought a health advocate. Her criteria: “Who will fight for me?” Hopefully, your case will not involve a fight, but whether your care needs a negotiator or a guardian angel, you will benefit greatly by having a partner who is prepared and ready to support you.