Sunday, June 13, 2010

The First Circle of Advocacy: Call to Action

Turning the Rig Around:

Healthcare culture is shifting. Who is at the front of it, do you think? No, it's not the government, even with the new changes in healthcare legislation. It's not the many non-profits out there trying to help patients. It's not even the healthcare providers dedicating their lives to helping the sick. Patients and families are leading this shift in culture.

Who else is more invested in the need for changes in healthcare? Who is more insightful on what works and what is lacking? Who else more desires open and effective communication with healthcare professionals? Who is crying out and asking the community for support, for understanding? Who turns to the government and says "look at my life, is this how our country wants to treat the sick and dying?"

Cultural shifts do not happen overnight. The changes that have taken place, are taking place, and will take place are not like a speed boat. They won't happen by one quick choice to turn the wheel change direction. Instead, these changes are like a large oil rig in a small waterway. The turn has to be made so slowly it might, at times, be impossible to see with the naked eye. It has to be done so carefully so that little or no damage is done in the process. This change happens slowly, but it is changing.

What Leading Looks Like:

If you are a patient reading this, you may be thinking "How can I be a leader? I don't have the training my doctors have!" If you are a family member you may wonder "How could I possibly take on a role as leader when I am so overwhelmed just caring for my loved one?" If you are a professional you may be skeptical and worry "What if all of my patients try and 'lead' my practice, won't that be chaos?"

"Leading" may be a misleading term. It is important to set as a foundation of this discussion that no one is asking a professional to not trust their own judgement, training, skill, talent, and experience. This is not about having patients take over hospitals, ignore the opinions of their teams, or have families demanding unreasonable plans of care. At the same time, this is not about holding tightly onto old roles and habitual ways of interacting. Moving forward into the age of Participatory Medicine, this is about become more mature in the way we approach healthcare.

Call to Action:

I have never met a patient or family member that didn't think healthcare needed an overhaul. From bedside manner to medical errors, patients and families are rarely shy in sharing their "war stories" and expressing their disbelief at personal medical fiascoes. This sort of discontent can be used one of two ways: it can cause us to lose faith in the system and assume a defensive posture or it can inspire us to be the harbingers of change.

If we want to have our voices heard, we must take our roles seriously. When the question "What medications are you on?" comes, it is no longer acceptable to answer "The blue one and the little pink one." We need to know our medication names (generic and brand), the dosages, the reason we take them, and the potential interactions and side-effects.

If we want to have our voices heard, we must take our roles seriously. Instead of talking about the dissatisfaction we have about a certain interaction or particular individual, we must talk TO the person responsible. Partnership can not happen when the parties involved are not relating directly to each other.

If we want our voices heard, we must take our roles seriously. Some healthcare professionals fear giving patients and families too much access to information. We must be respectful of what we do not know. At the same time, we can help professionals see that when we learn how to read valuable data, we become stronger partners in care, not the hysterics they theoretically imagine us to be.

If we want our voices heard, we must take our roles seriously. We must ask of ourselves the same things we demand of our professionals: clear, concise communication, compassion, and respect. We must hold ourselves to a similar standard that we hold our professionals: to work in partnership, as a team. We must work through frustrations and personality issues for the best healthcare experience possible.

We must become humble, polite, persistent squeaky wheels. We must become responsible partners in our own care.

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