“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 at the time of your demise to prevent someone from instituting CPR. You could have every single organ system in total shutdown mode and they would still pump on your chest if you hadn’t dated the paperwork properly. And resuscitation doesn’t even work that well in the vast majority of people.v
This is only one example, but it turns out to be an incredibly important example, of how far off-track American healthcare has gone. And I know. I’m part of it. I go to arrests all the time. Our emergency rooms and ICU’s are choked with elderly dying patients, often unaccompanied by relatives or paperwork, and nobody knows what to do so everything gets done until a day or two or three later when someone finally reaches a family member who says: Oh, Mom (or Dad or Auntie or Whomever) didn’t want to be resuscitated. We’d talked about it, we just never got around to filling out the paperwork. Please withdraw support! Resuscitation—by law—is a given; you must actively and with great difficulty opt out. In some states it’s nearly impossible. But more importantly, it is not one procedure, but a pathway. It is a pathway that starts simple but grows more complex, and that works well only in particular patients, costs money, often does harm, and—in the best circumstances, meaning in-hospital arrests with high quality CPR and ACLS (Advanced Cardiac Life Support)—results in thirty percent resuscitation. That sounds pretty good, but in fact only about five percent of survivors actually leave the hospital. And those tend to be the people you don’t expect to arrest; they usually have something treatable. Published statistics sound better than that, but I don’t believe them because I’ve seen how studies can skew results and it’s well documented that people don’t want to publish poor outcomes. Don’t even get me started on the research paid for by drug companies. There is high variability between studies; in other words, they aren’t reproducible. People arrest for a reason.
~
I stepped forward, placed an arm around the disheveled daughter’s shoulders and pulled her—not gently—back from her dad, his hospital bed, through the door, and into the hallway. The conductor had ceded control of his orchestra.
“I didn’t get your name.” I took Kleenex from a pocket and handed it to her. “Let’s go for a walk until the catheter’s in and your dad is feeling better.”
“Thank you, doctor. My name is Anita. Thank you so much for your help.”
~
A few days after breaking her arm, Mom left the hospital for the nursing home facility affiliated with and located next door to her retirement community. This nursing home had the same type of alarm system as there had been at the hospital, with the sensor pads on the bed and on the floor. Mom was at the nursing home for no more than a half hour before she fell out of bed and landed on the floor in an attempt to go to the bathroom alone. Because of her dementia, she did not remember to press the call button for assistance. And because of the type of nursing home that it was—average, no better or worse than most—no one would have come anyway.
I called Robert and asked if he had someone available who could care for her twenty-four hours a day. He said yes, and she could begin that evening. Bonnie and I packed Mom up and took her home. From then on, Mom accepted a caregiver without question. That’s when Vicki entered our lives. Vicki moved in, giving Bonnie and me a much-needed respite. Mom stopped fighting her battle for independence when Vicki arrived. She became docile. I breathed a sigh of relief at the same time my heart broke and I realized that the astrologer had been correct. The end was coming. Vicki took meticulous, loving care of Mom and Mom instantly adored Vicki. We were lucky that my father had planned ahead and saved enough for his and my mother’s old age so that we could afford to pay out of pocket for Vicki. We were lucky in an untold number of ways. It took me a long time