Why You May Need a Health Advocate
I've been thinking lately about how important it is to have an advocate available when you receive a serious diagnosis like cancer. It's on my mind because my father's wife is going through treatment right now and I think she could really benefit from one.
I imagine she is like most people who are diagnosed: scared, confused, and overwhelmed. I know she wants to trust that her medical team is doing the right things and honoring her wishes, but she really doesn't know for sure what's going on. Not having been through this before, she doesn't even know what questions to ask. I can help her a little bit through conversations over the phone, but what she really needs is someone there with her, who knows the ins and outs of the process, who can guide her along.
At UCSF, they have a cool program that you can request that does part of what I think a good advocate would do. At your request, they will provide someone who meets with you before an appointment with a doctor, finds out what you want to get out of the appointment, and then accompanies you to the appointment to be sure you get what you need. This advocate takes notes for you and makes sure all your questions are answered before the doctor's visit is over.
This is especially useful given how many people get overwhelmed when meeting with a doctor, forgetting what they wanted to ask and not being in a space to take in all that the doctor is saying. In my case, I didn't request this service because I have always been comfortable communicating with doctors and remembering the details. And yet, in retrospect, I think a service like this might have helped temper some of my frustration with my surgeon. I bet an advocate would have made sure that the appointment didn't end until the surgeon discussed my pathology report with me and we would have been able to discuss the test results I expected but didn't get. So, if you are in the position of navigating a diagnosis like this, I really recommend you pursue any services like this to make your experience better.
And yet, as I indicated, I think this is just part of what patients need in terms of advocates. Patients also need buddies and mentors, those who have walked the path before them. Whether found informally or through an organization (I know that in the San Francisco Bay area, the Community Breast Health Project provides services like this) buddies and mentors can make a big difference during treatment. They can let you know what to expect, help you should ask for, and offer tips that will ease your treatment.
Sometimes it can be hard to ask for help. Other times, you "don't know what you don't know," and it's only later that your realized someone else could have made a difference. If you have been diagnosed with something serious like cancer, please do yourself a favor and start looking into advocate and buddy services from the start. This journey is scary enough; you don't have to make it alone.
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