Wrapped in my own gratitude for my husband’s safe journey through a difficult surgery this week, I listened as another patient and another family struggled with a less favorable course. And my heart still hurts for this stranger. I will never see him again in all likelihood, but his trauma will play out thousands of times today across the nation and tens of thousands of times this year. And he never saw it coming.
Ten days ago, this patient now in a huge, highly respected urban medical center was living a normal life – or at least trying to. I heard his family say he had headaches for months that specialist after specialist seemed unable to diagnose. Nine days ago, he had a stroke.
I didn’t learn any of this by talking with the patient or his family. I just overheard it as my husband shared a room with him after they both had transferred out of the neuro-intensive care unit.
When he awoke, he was in a hospital bed, unable to move most of the left side of his body, and wearing an adult brief due to his inability to control bodily functions. His wife died some time ago, and at 60 years old, he is raising a teenaged daughter. Periodically, his daughter, his sister, her grown daughter, his twin brother and his niece would come to his room. Loud and a bit brash, they would call out orders to him to try to get him to move a limb or a finger or show some level of mental or physical activity that would point toward post-stroke improvement. He did what he could to oblige.
His sister announced that she was “the bull dog” of the family. She stated she was there to make sure he signed papers giving her legal authority over his daughter and his finances and that she would be in charge of next steps in the decision process for his medical care. His brother was obviously shaken by the whole scene but also obviously unable to change the pre-stroke dysfunction in the family.
When nursing assistants came to his room, they would chastise the patient a bit for being too modest to allow himself to be exposed as they checked his brief and tended to his linens. His mind and speech were sound enough for me to hear him repeat over and over again, “But my niece or my daughter could come in at any second.” To which the aides responded that he’d have to get used to the changes in his life. One time, the aides were mad at him because he had not urinated, as if his profoundly altered mental and physical status could be overcome by the will to do so.
Soon enough, a group of doctors came into the room. My husband and I were on the other side of the curtain that separated the two beds in the semi-private room, but we still could not avoid hearing the conversation. The doctors checked the patient and listened to the “bull dog” sister recount the night the family found her brother slumped in his chair after the stroke. The doctors also told the patient and his family that he’d not be discharged home but to a rehab facility – not the one where the doctors felt he’d get the best care but to one his insurance company and coverage would allow. The only question his family asked about that was if it was a longer distance from his house.
Soon, it was evening. It was just a few short hours later, and all the activity stopped. The patient’s family left. No more doctors. His food tray sat on his bedside table untouched until another aide came in. She asked him, “Why are you not eating?” There was silence. She stirred his mashed potatoes. She opened his juice carton. She told him he’d have to eat to get better. And she left.
My heart was about to break. I thought of what this man had already been through – months of headaches and a medical system so disjointed he was being tested stem to stern with no relief in sight, then a stroke (while alone in his home), waking to his brain and his body malfunctioning and wearing a diaper, listening to his family bicker and banter about details of his life going forward, hearing his doctors say he is going to a facility not because it is the best but because the insurance company says so, and finally having people wonder why he doesn’t feel like eating?
I did not know this man. I did not know his family. My husband’s course was much different – in part because of different physical issues and scenario, in part because he is lucky enough to have Medicare as his primary coverage and not a for-profit private insurance company, and in part because I live and breathe these issues in my working life. But still I was hurting for this man and for the thousands of patients across this country who are in the same leaking boat.
If any one of us thinks we’ll know exactly where we will be and with whom when illness or injury strikes us, we are delusional. It is enough to deal with the health event itself without all the other indignities. Unless each of us would like to be in this man’s situation, we have to address the systemic issues that force this inhumanity. Ask yourself, how hungry would you be? Would the mashed potato or the banana or anything else in the mechanized, soft diet seem important (that is really what they call it)? And 10 days ago, life was pretty normal for him.
We have to fight. We have to change this. So long as we start out by viewing patients as profits, all other issues will flow from that point. I am convinced of that. When we can view all patients as worthy of one single standard of high quality care then all other issues will flow from that spot too. Family dynamics are what they are. But even in those relationships, if the patient’s well being was valued above all else, the bull dogs might be less inclined to bite.
Support Medicare for everyone – not slicing and dicing Medicare. Because tomorrow or next week or a month from now, you could be the one lying in that hospital bed, in a diaper, waiting for others to decide everything for you. It would be better, in my view, if we protected ourselves beforehand.