Tired tonight. A mental fatigue. Tired out and dismayed by the challenges cancer patients are faced with in addition to dealing with their disease.
My friend has stage IV prostate cancer and has been at the same hospital since his diagnosis. Even though it serves the indigent and he could have gone elsewhere after he got on Medicare, he has chosen to stay because he likes his doctor; he likes the nurses in the infusion unit. I think there are other reasons, too. Why would someone dealing with this disease want to think about changing?
Long calls today to the hospital social worker, family members, advocacy organizations, service agencies, more visits with family members to catch each other up on the news and to give the primary caretaker some encouragement. He’s tired, too. He says he’s been tired for a month. He’s a single parent and taking calls at work from Home and Community Based Services discussing eligibility for his dad, calls to the social worker about the reasons his care has been interrupted at this late date without an explanation or help to transition to another medical provider.
The patient’s symptoms make it difficult for him to navigate the systems involved – health care, government Medicare, insurance companies. The appointments scheduled this month included one for a transfusion to address the severe anemia, one for an infusion of zometa to address the bone loss secondary to the disease and the treatment, a Coumadin check, and an appointment with the oncologist to see whether, after 30 days, the new medication was working, as the chemotherapy infusions were stopped when they quit working. He went to the appointment with the oncologist and a woman whose name he didn’t know, and whose position at the hospital he wasn’t aware of came to him in the waiting room and told him in front of other patients that he had to leave and he couldn’t come back. And, he thought she also told him he couldn’t talk to anyone about it.
That was one week ago tomorrow. Today, we were finally able to learn that the problem is related to the Medicare and supplemental insurance and may be able to be fixed tomorrow – but it also may not.
Needless to say, the way it was handled was completely outrageous. I spent time today trying to locate an advocacy organization that could help find the problem and work through to a solution. I went online to the American Cancer Society web site, entered the zip code, and learned there was a “Patient Navigator” in the patient’s local ACS office, and when I called and explained what happened, she gave me a toll free number for a national nonprofit organization. So what a patient navigator does, or what a patient advocate is, or how a cancer patient whose care has been suspended at a critical stage can find a local office or person to help him is information that does not come easily when it is needed.
My friend said it was okay for me to call, and I went through four recorded menus until I reached what I thought would be the right selection. Seventeen-and-a-half minutes later, after the most recent recorded assurance that my call was very important, the background music was no longer playing, and I wasn’t sure I was still connected. I waited a while longer, heard no more music, never got another recorded assurance I was on hold, and decided I had been disconnected. The patient himself would have never made it through the recorded menus.
But we were able to talk with the hospital social worker this afternoon and she has a meeting scheduled for tomorrow to try to get the problem resolved. She’s not sure she can do it, but she will try. The Coumadin clinic appointment will have come and gone. It will be 7 weeks since the Coumadin levels were checked. We don’t know when he will find out whether the new medicine is working, or what he will do next if it is not.
Someone who needs two pints of blood, whose blood pressure is very low, who is in pain and having difficulty walking, will show up with his paperwork to see if a bureaucracy can untie its knots so he can, he hopes, resume treatment. And monitoring. Why wasn’t this handled last week? Why was this cancer patient exposed not just to another lapse in treatment, but to a week (so far) of anxiety about the reason he couldn’t see his doctors and get his treatment, and whether he would have to start now to find other doctors?
I am still just shaking my head, and I’m exhausted, and I’m not the patient. This is completely outrageous.
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