The good manners that our mothers taught us, those manners that help us in social situations and open doors and allow us to have a lovely conversation at a dinner party…. those are the same manners that do not necessarily serve us well when we are patients or advocating for someone who needs help navigating today’s medical system. There are times when you need to put the manners on the sideline and find your most direct words for communicating. I have witnessed it firsthand. I have been called in to be a patient’s advocate - that pit bull that accompanies a person to a doctor’s appointment or who stands guard at the bedside. I have relied on people being that pit bull for me. The reality is that the American healthcare system is overwhelmingly complex. It is intimidating. It is labyrinthine. And whether you are the caregiver or the person who is being cared for the whole process is just downright complicated. I comment to my elderly mother every day that even with all the medical knowledge I have, there is always something new ( and increasingly unnecessary) that makes everything more difficult and confusing.
There is an old wive’s tale, conventional wisdom if you will, that if we stand up for our loved one’s rights, then somehow the doctors and nurses will target them as being high maintenance and not treat them as well than if they were docile. In the forty years that I have been a physician, I have never seen a nurse or doctor push a patient to the side just because family members are speaking up. On the contrary, the squeaky wheel does get the grease and doctors like invested patients and families.
Several years ago my father developed a case of shingles that was severe enough that it attacked his left eye and spread along the optic nerve to his brain. He developed viral meningitis and encephalitis. His vital signs were fluctuating and while we waited in the emergency room I believed that we had a narrow window to stabilize him…not hours or days. An eighty-year-old man does not have the resilience of the immune system that you and I have. I was growing increasingly antsy waiting for someone to evaluate him and get him to a hospital bed. I left his gurney and hovered at the nurse’s station. At one point I realized the nurse was speaking with the hospitalist who was trying to avoid me and I took the phone out of the nurse’s hand so I could connect with the doctor directly. The communication was uncomfortable for both of us and even though this was not a position I wanted to be in I was becoming every doctor and nurse's nightmare. I hated being in this position but someone needed to speak for my father or he was going to fall right between the cracks. My father was now on death’s door and every minute was ticking by.
And you know what? That intervention saved my father’s life. Niceties had failed me and I was transparent to the hospital staff about my frustrations and the need to attend to my father. I needed to get things going. I had to make the hard decision that it didn’t matter if a nurse didn’t like me; the relationship with this nurse would come and go. It was the relationship with my father that I cared about the most. I was willing to take the risk of a doctor saying to me, “Perhaps we are not a good fit.”
All I knew then and now was that I had an obligation to those I have taken an oath to protect. And at that moment, the person I was meant to protect was my father. Most of the time the system works well. But when it does not work and you find it fractured, you will find yourself caught in the middle. At that moment you have to summon all the courage you have and speak truth to power; caregiving is not for the timid. And that is one of the things, frankly, that makes it all so damn exhausting.
To me, caregiving is about preserving the quality of life while shepherding a patient through our medical system - during routine appointments and during emergencies. Part of this is letting the person who is being cared for have a piece of the decision making process whenever possible. Life with dignity and death with dignity are two things that we do not talk about enough. But isn’t that dignity and caring what we really want for everyone?