I feel like I'm just scratching the surface of maneuvering the hospital system, and I have a surprising number of friends in the medical community. I understand liability, protocol and how different doctors are trained to approach things in a different way, specific to their specialties.
Surgeons want to operate. Oncologists focus on cancer cells, often ignoring other health issues that also threaten to cut life short. There is so much protocol -- and, let's face it, there are SO many people with cancer! -- that doctors tend to forget that there is a person underneath all those bad cells.
In dealing with both my mom AND my dad (in two separate hospital systems), not one doctor or staff member ever mentioned an amazing resource that exists: the Behavioral Oncologist.It was only in talking with a friend, a friend I ran into at a coffeeshop, whose daughter happens to be a behavioral oncologist (at the same hospital where my mom was) that I even began to understand what that job is.
I had to bring it up myself (children: the advocates!) to my mom's main oncologist, and he agreed that it would be a good idea to see such a doctor. He said he'd arrange for an appointment. His staff didn't follow through. A month later, I asked about it again, and they made an appointment for her four months later. This was for a woman with metastatic pancreatic cancer.
No one brought it up with my dad until I pointed out to a staff member that, well, no one had yet brought it up.
Now that I've ranted about how it's not a service that is readily offered, but seems to be a service that every hospital has, let me explain what they actually do, at least in my own experience.
They listen to you. They understand cancer, but not just how it affects your body. Their focus is how it affects your mind, your relationships, your life, your feelings, your quality of life, and they can help you sort through your feelings about treatments, which then can help you make major decisions -- such as to continue treatment or reach out to hospice to help you enjoy your last years without pain.
My mother was never one to talk about her feelings, so her visits to the behavioral oncologist were quiet. She also was pretty passionate about choosing quantity of days rather than quality of life, but it was really nice to have a doctor who listened to her, who knew the other doctors, and who could help her figure out what questions to ask and how to prioritize her time. There was someone to help her understand timelines and to help her manage her anxiety and depression, not just the symptoms of the cancer itself.
As a family member/caregiver, I qualified to see the Behavioral Oncologist myself as a patient. I still see her, though my mom died months ago. She's been a wonderful resource in navigating this insane health care system and this crazy cancer ride.
Not much more to say here, but I'm trying to write more without violating anyone's privacy. Someone out there -- someone who doesn't have close friends who work behind the scenes and can pull strings -- needs to read about Behavioral Oncologists.