Wednesday, March 19, 2014

Two Illnesses and a Death: What I learned About Patient Advocacy

Whether my fortune or misfortune, recently I have had the opportunity to flex my patient advocacy skills for the benefit of my closest friends. Although each situation was radically different, much to my surprise I could leverage what I have learned over the years and find that I am very comfortable in a hospital/medical setting, maybe too comfortable (LOL).  The skills I learned for one specific illness can be transferred to another illness. The specifics are different but the rules are generally the same.  Newbies (those new to medical treatments) find the system daunting. I used to think it was about intelligence.  It has nothing to do with intelligence. It seems a lot to have to do with expectations, naiveté, and language.  There are code words everywhere, and now that I have done this over 20 years I seem to have learned something. It is like how I learned gardening. You learn by doing and repetition, and by exposure to the language. Think of it as language immersion classes. 

The most important thing is even if you don't think you know something …. ASK… ASK … ASK. People are far too often afraid to ask the doctor questions. Some worry, even myself that she/he may get irritated. Go for it. It is your only opportunity.  You are paying for it. Doctors have a pretty good ego. (And, if they don’t there are other problems to think about. That’s a yellow flag in my book.) It is your life after all. I use the mantra, I am the CEO of my body. It is the doctor's job to answer your questions and help make sure you two have a good working relationship. If not, that can be/should be a deal killer. 

Follow your instincts, not some dictum, even if the doctor is the "Top in their field”. Medicine is taught and delivered by humans to humans and to deny that human factors in medicine exist, is being in denial. All this means is that medicine, whether Western or something else, is never ever perfect. Don't let anyone tell you otherwise. My motto is: You can have good outcomes with bad doctors and bad outcomes with top doctors. It is ultimately a crapshoot. All you can do is the best you can at any given moment as does the doctor and his/her team. 

You have to follow your instincts of what is right for you, and hey sometimes that doesn't always work out. Ultimately you have to live with the consequence, which means each medical decision you, as the patient, make needs to become your responsibility. I find that a useful technique because then, if something goes bad, I cannot say well…this is x and y's fault (unless it clearly is, e.g., a mistake was made). For me, that technique increases my investment in the medical decision/choice at hand.  So, I take joint responsibility with the healthcare provider and their team, whether it be a Western or non-Western approach. 

That leads me to the next realization I had…a new diagnosis leads to all sorts of well meaning people who want to share, help, give, impart knowledge and experience, commiserate, love the person(s) in the medical crisis. As a patient, especially with a new diagnosis, and lack of experience in the medical system, you have to filter, rank, and analyze all the incoming inputs. This, I have seen can lead to treatment paralysis, or treatment overkill from everything to Ayurvedic, to Andean shaman, and bee-sting therapy, that doesn't include all the detoxing and supplement overdosing that can happen.  It is hard. There are so many choices out there. It can be helpful to get a good third ear to listen and help make decisions, and then run the decision past that, can I live with this “filter" and go with it. Sometimes you have to tell people to stop giving advice, but know they are coming from a position of love. And, sometimes, especially during an acute crisis, people's personal issues get intertwined with the desire to help, so one needs to keep that in mind too. I still struggle with novel treatment solutions to varying degrees.  It seems to be inversely correlated with how well I am feeling. When I am feeling worse, I start rooting around looking for a new thing that is not Western mostly, and even new Western techniques, and start a supplement regime.  I just did it last week. So, even old-timers, suffer from looking for the new best thing. And, sometimes it is good to do, as time moves new treatment protocols come along, so it is not all bad to look for new things.

Lastly is patience, there is nothing like the motto, “Patients are practicing patience”. From waiting rooms to diagnosis, to healing, to dealing, with billing or rehabilitation, to … you name it.  I find it a sublime meditation. For me, that has been the metaphor and mantra of my evolution, and continues to be that which I need to work on most. I have learned when I need to hurry things along and those that don't really help hurrying. Medicine, especially when it involves you, can get very complicated, and sometimes we do ourselves a disservice. We try/want to hurry things along especially healing, that is another really hard lesson! Giving us time to heal, giving one self-permission to heal, and sticking up for it is a real challenge in this culture. We are far too trained in our society to focus outside ourselves …work…do…We are nothing if we aren't doing. (I am not one to talk). Healing both physically and spiritually is very important. And, in a world that is not comfortable talking about, or acknowledging, illness and death, it is not easy to give permission to take time to heal and to slow down the pace. Sleeping is so important for healing of the body and the brain. That is one of the reasons that hospitals are quiet.

Looking back on the last weeks these are the big picture things I learned from being with my friends in their difficult times. I hope to look at each story and bring out more that I learned to share.

Here are the tops tips:
  1. Ask questions!  You are the CEO of your body; it is your right to know and be informed
  2. Learn the language
  3. Trust your instincts.
  4. Live with your decision. It is no one else's.
  5. Filter well-intentioned recommendations (go through steps 1 though 4)
  6. Have patience with all of the above and yourself. It takes time to learn the language and nuisances of the system. 
  7. Give yourself permission and time to heal.


Unknown said...

Thank you, Alex, for writing and sharing this essay. What's that saying? I'm sorry you had to learn all this but I'm glad you're teaching me? If that's not a saying it should be.

Unknown said...
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MightyCaseyMedia said...

"See one, do one, teach one" has long been a staple of medical education. No reason to think it would not be the same for those of us playing on the patient team.

My advocacy journey started with advocating for, and then managing hands-on, my parents' care thru end of life. So by the time I wound up on my own journey through what you call the "bush of doctors," and what I call the health care car wash, and it is indeed an education process. One that those who've been there/done that/have the t-shirt (and the knife scars!) need to continue to see one, do one, teach one ...

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