Patient Advocacy: Double Edged Sword

I'm very excited to meet one of my heroes in the empowered patient movement today. There are many such heroes and champions out there - advocates for patients. Dave's "let patient's help" mantra is exciting and inspiring.

As I have said before, I cannot see a place where we can have advocacy for patients, without having advocacy for caretakers, nurses, doctors, pharmacists, and all of healthcare. (and that includes the people who work within the system, like people cleaning, cafeteria workers, service workers, security, house keeping, and all the other "invisible people" who make the work of healthcare happen.) We are all in this together.

I cannot fathom any healthcare getting better or improving or having "patient advocacy" or empowerment without all of these things improving. We must start somewhere. I have heard many doctors use the standard, "patients first" line. And then I have been a patient and caretaker long enough to say this-- THAT'S NOT HOW IT ALWAYS WORKS. I know better. I know that things break down even though it is not what is intended. And I know that we must have checks and balances and we must have people who work WITH us to make it happen.

But advocacy is such a double edged sword... it is so culturally embedded. It is almost like if we (as patients and caretakers) aren't yelling about something or speaking up - (squeaky wheel) that we are left behind. THIS IS NOT OK. There are so SO MANY populations out there who WILL NOT - NOT NOW NOW EVER speak up for themselves. These people cannot be left behind. These patient and caretaker populations must STILL get good medical care. (I can list half a dozen-- so recognize that MANY MANY patient populations are NOT out yapping about their illness or surgeries nor are they educating themselves NOR are they questioning their doctors. THESE PATIENTS STILL NEED QUALITY MEDICAL CARE. They cannot fall through the cracks).

Let me give you an example: Older populations

For example: I specifically worked with a pain management doctor for my father - aside from the oncologist - to deal with pain. My father, of course, is stoic and during most of the treatments has been unwilling to admit to pain. He has said, "If you need oxy, you might as well just take tylenol and if you only need tylenol you might as well not take anything at all, just shake it off." He is someone who has NEVER taken opiate meds and until NOW has seen them as unnecessary. Pain was not something that got in the way, it was just something that one over looked.

His onc writes for oxy. His pain management doctor writes for liquid dilaudid and fentanyl patches. Why? My dad WANTS to try to swallow and having oxy gives him a sense of empowerment. I work with the pain management doctor because I watch my dad suffer and when the pavement hits the road, I see how it really hits home. He takes the majority of his nutrition through a feeding tube and oxy cannot be crushed. Oxy is hard to swallow. That the radiation, onc, pain management doctor and pharmacist don't all communicate is NO SURPRISE TO ME. That my father is loathe to admit to pain IS NO SURPRISE TO ME. When he groans in pain and refuses food and I am forced to push nutrition through a tube - THAT SAYS IT ALL. I don't give a fuck what his onc wants - *I* know what is really happening.

But something awful happened. Something that should NOT HAVE HAPPENED. A breakdown in communication. I use HIS pharmacist and HIS pharmacy on purpose. They know what is happening and he gets all his drugs there. All of them. They've given him liquid dilaudid and fentanyl patches before. But last time my mom took the Rx's they refused to fill them because oxy had just been filled for a surgery from a different doctor. It wasn't the "regular pharmacist" but a floater and for some reason they didn't call the pain doctor to check. (even though it is the hospital pharmacy and not a busy hustle bustle retail pharmacy. When I spoke with the manager today he was amazing and we made it work. But the point is - THIS work- THESE added painful moments of not having proper pain control for cancer patients - it is a doozie.

So he tore up the new Rx's... and my father went without his pain control. And no one told me until I went to use them and they were not there. And guess what happened. LAST NIGHT my father was in ENORMOUS PAIN. And he couldn't take his meds orally. And even so- the oxy wasn't helping. Lately we've been using dilaudid for break through pain. But he's out of them... and what happens now? What happens when I go to use more patches and they are NOT THERE?

EVERYONE needs to recognize that some patients are not able to advocate. The very sick, the mentally ill, older patients, and cultural differences-- they affect how people challenge or advocate for even the most necessary issues. My mother doesn't understand how to "advocate" for my dad or tell the pharmacist that he is a cancer patient and NEEDS more pain control. She is old school. She "trusts" doctors and pharmacists and she "trusts" that they are never ever wrong.

(Even KNOWING that my dad didn't have the patches OR dilaudid, she is going through this awful shit WITH MY DAD. She is getting hit with cancer too. I even yelled at her this morning until I realized that I was heaping more pain on her. She WILL NOT CHANGE. I CANNOT CHANGE HER. And I was being mean to her. I need to do this FOR HER too. Basically- I need to advocate for my mother too. I need to caretake the other caretaker. Hence, my belief that there must be caretaker advocacy. She was unable to recognize the differences in pain medication. She didn't even realize that oxy couldn't be crushed. NO ONE TOLD HER. Not the doctor, not the pharmacist. She didn't realizing many of his drugs couldn't be crushed. And no one told her. But we both tube feed my father. So getting him crushable pills has been a big deal. COMMUNICATION IS A BIG DEAL. (Also imperative that pharmacists recognize their tube feed only patients).

When the pharmacist refused to fill his Rx, she didn't tell me because she "didn't want to make waves" - not realizing that *I* would have simply gone down there, pointed out he was a cancer patient, had the pharmacist call the pain doctor, waited while the manager filled it, and no waves would have been made. The ONLY thing that would have happened is that my dad wouldn't have had to go a day without proper pain control. But when you live in fear of upsetting people in power (who cannot POSSIBLY BE WRONG) you don't see it that way.

In her world, one pain med was all the same. *I* had to tell her that they were different. And that crushing it would be a problem.

And he looked at me and said, "It is time for something MORE." And I couldn't help. I couldn't HELP because I didn't know the entire story. I didn't KNOW why they didn't fill.

So- how did I fix it? I had my mother LISTEN to me on the phone today. I talked to the pharmacy manager. He was very cool. I explained exactly what happened. And of course he saw the Rx's that went unfilled. And he felt awful. And I said, "My father didn't have proper pain control last night because I didn't know that you refused his fills and my mom didn't tell me because she believes all doctors and pharmacists are right and she didn't want to upset you. Meanwhile, sometimes you are - and you see where it broke down. We cannot work at cross purposes. How can we fix this so my dad gets his pain control? How can we make this NOT ever happen again?"

And he rocked. He made notes. He got in liquid dilaudid. He made suggestions for patch control that would make it easier... and even if my dad WANTS to try to swallow how to do the conversions so he can feel in control WHEN he can swallow and how I can supliment when he cannot.

And I said, I am going to let my mother understand this too, so she recognizes and understands all this too. And then we will get these this morning. And I wrote down all the conversions for her. And we made it happen.

I said to her: You don't have to ask your doctor for PERMISSION for pain control. AND if you don't think you can do it, *I* will. And then I scrambled us both eggs. It is a new day. Advocacy only works as much as those who are willing to advocate. And specific generations and populations of patients cannot. If a patient's daughter knows her stage IV father's pain and the mother is trusting - that is a huge deal. I'd call it a clusterfuck - but really- it is what healthcare IS right now.