also. It’s illegal to ‘confine’ patients now.”
I tried to take this in. Make sense of it. “So basically Mom is free to fall out of bed, get injured, and then the alarm will sound. But she would be illegally confined if we put up the side rails to prevent her from falling out in the first place. She has the right to be harmed, but not be confined,” I said.
There is no way that one system fits all patients, neither in concept nor in implementation. To protect some, we harm others. The rights of patients, as defined by politicians, were a rabbit hole.
“Well, no... the alarm sounds when she starts to leave the bed and someone at the nurses’ station hears the alarm and comes into the room,” the nurse assured me.
Maybe I look stupid. I don’t think I look stupid, but I’m often underestimated. I think it’s the blond hair. But I’m much smarter than I look. And I’d spent decades in hospitals listening to alarms go unattended at empty nursing stations. Hospitals—nationwide—have staffing issues. Let’s not pretend here. I don’t know a single person who has ever worked in a hospital who has not had the experience of listening to alarms and call buttons ring and ring and ring. So I knew exactly what this whole scenario meant for my mother. We had a barn door and horse situation. Mom was already disoriented. Hell, I was disoriented! Add some pain medicine and she’d be hallucinating in no time. I closed my eyes and shook my head.
“It’s against the law to confine someone.” I heard stridency in her let-me-tell-you-the-rules voice, the certainty that creeps because if something is illegal, someone somewhere must have given it some thought, right? Instead of what really happens, instead of the massive bureaucratic compromises that actually occur in public policy everywhere particularly as applied to health care. That’s how our system works. Never assume common sense has been applied at any step along the way. Ever.
“But it’s not against the law to prevent them from falling out of bed,” I said. I wasn’t going to point out the obvious: that was how she’d broken her arm in the first place. And now we had a state law designed to protect patients that effectively accomplished the opposite. Doesn’t that define the law of unintended consequences?
“We’ll keep a close eye on her,” the nurse told me.
Right. I knew how that would go. Bonnie or I would need to be there twenty-four hours a day. Or we would have to hire someone. The good news was that Mom’s arm hurt enough that she wouldn’t use it to try to move around too much right at this moment.
“Can I go through her medications with you? I want to make certain that I have all the orders from Dr. Helms.”
I sat down and gave her the list of medications, allergies, food preferences, and then I told her to make certain the chart shows that she is Do Not Resuscitate.
The nurse gave me a cold look. “Are you the power of attorney?”
“Yes, I am,” I said mildly.
“And I suppose you have the paperwork with you? Is it something you carry in your purse just in case?”
I took a very slow deep breath. I took a cleansing breath. A do-not-lose-your-temper-now or you’ll-regret-it and your-mom-will-suffer breath. I searched my heart for my hard-earned clarity with regard to this bullshit. Where the hell was it?
“No,” I said, “but I can have it faxed if you give me the number. Or I can bring it tomorrow.”
“Fine,” she said. She spun on her heel and was gone from the room.
This had turned into a completely ridiculous situation. And I’d made an enemy. My sisters and I decided that we did not want our mother resuscitated in the event of a cardiac arrest. We had discussed it with her physician. He agreed with us.
~
Brisk footsteps announced the midnight arrival of the urology resident, a clean-cut, wholesome, Navy fighter pilot of a doctor. He was a couple years older than I, tougher, wiser, a conservator of charm. He introduced himself to the obtunded conductor and his daughter, then set up the catheter insertion set. He felt Nathaniel’s enormous bladder. He went about the urology business without delay, not engaging the daughter who seemed mesmerized by the practiced economy of his actions. He struggled to feed the yellow rubber catheter into the old man’s member, past the hypertrophied prostate and into the distended bladder. Finally, with this latest insult, Nathaniel stirred, and a moan of pain escaped him. The daughter dropped to her knees beside the bed, clinging to her father’s hand. Tears fell to the front of her blouse. Shudders reverberated through her body; her sobs shook the side rails of the hospital bed, perhaps the hospital itself. Her anguish seemed nothing less than razor-sharp, astonishing. Standing behind her, I shut my eyes against her pain; it reached me anyway. When I looked up, everything had changed: Nathaniel, gorked and up to his eyeballs in piss, appeared to be the lucky one. Not long for this world, a simple rubber catheter would cure his ills. The urology resident would move on to the next enlarged prostate. I would change out of my tuna-scented attire and go home to my family. But Nathaniel’s daughter might not recover so quickly.
~
My mother’s life, at ninety-two, consisted of spending all day every day in a chair, staring at a television screen, unable to hear the dialogue, unable to read the words that ran across the bottom for the hearing-impaired. She looked forward to visits from family members, and then promptly forgot who visited as soon as we were out the door and complained that no one visited her. She was plagued by arthritis, confusion, loss of memory, and disorientation. Her bowels were completely unpredictable and a source of ongoing embarrassment and distress and pain to her. Until she forgot them too. That pretty much described a typical day. To make matters worse, she knew she was losing her mind and it tortured her. Imagine what that’s like, she often said.
If she were to have a cardiac arrest, a code blue team would rush into her room, pump on her chest, deliver an electric shock that jolted her entire body, put a tube down her throat, give drugs such as epinephrine, vasopressin, amiodarone, etc. Unfortunately, the rate of successful resuscitation of in-hospital patients over the age of 70 is around12%, though the data are all over the place. Resuscitation is one thing. Survival to discharge is quite another. Data for patients over ninety remain sparse, but are probably in the range of 3-5% survival. That’s how many survive the arrest. Very few actually leave the hospital. No one has looked at one- or three- or six-month survival, as far as I know. And I’ve searched. With a diagnosis of cancer the resuscitation rate is incredibly low, typically less than 5%. The numbers that are available do not parse out the quality of the resuscitation, meaning whether individuals who have been resuscitated are cognitively impaired, or even alert, or back to normal. It is generally assumed that resuscitation means they are simply alive. Our mother’s dementia had significantly worsened over the previous four years. Performing cardio-pulmonary resuscitation—it seems safe to assume—would not improve her mental status. If anything, were she to be successfully resuscitated, she would be even less with it than before. And a thirty-year old nurse was trying to shame me for not wanting that type of care for my beloved mother, who already was suffering. I would tell the nurse to go f**k herself, or better yet, educate herself, except that she’d probably take it out on my mom. And the problem really wasn’t this one nurse, it was the system that led her to believe that indiscriminate resuscitation constituted appropriate care in the first place.
We live in a society where we act first and think later, or don’t think at all, particularly with regard to resuscitation. Everybody gets resuscitated unless it is practically tattooed on your forehead, big oranges signs everywhere, your attorney and your physician at your bedside with legal documents in their hands
