Permit me to share something. It’s personal, yet universal. I hope it helps somebody.
This column was on hiatus last week. My mother was grievously ill; there were ventilator scenarios; she finally passed away.
Some of you have been there. For others, the biological inevitability of a loved one in a clinical, life-tethering setting awaits. As does the accompanying roller coaster ride of emotions, ethics and psychological anguish and irony. Those longest-of-long-shot hopes; that ultimate decision to uncouple a patient from the myriad of life-support tubes that contort features and convert life to existence. The vigil, the doubts, the tears, the sighs, the end.
There will be times when you can’t help but feel like an accomplice – or worse. And that’s not fair to you. The quality-of-life crucible is unique: a haunting, daunting dynamic.
On one hand you preternaturally root for a miracle – the kind that defies the reality of why an 83-year-old with emphysema and heart failure is in the critical care unit to begin with.
On the other hand, you perversely root for the heart-rate and respiratory numbers to head south to end the ordeal. And part of the ordeal, you well know, is the enervating impact on you. You feel selfish. Once again, not fair to you.
You see that a patient at the opposite end of the CCU has died. There’s a long family queue and audible crying. You begin to envy the closure crowd. It’s a normal reference point on the emotional continuum.
Despite the obvious solemnity of the situation, some visitor exchanges are veritable reunions – especially if it’s a Florida family member in a Doylestown, Pa., hospital. As hours turn to days and eventually into a fortnight, you can forget to take every such exchange into the corridor – or the waiting room. You feel like an infidel for disrespecting the patient who can’t participate.
You also find yourself jealous of those nearby patients who can interact normally with their visitors. You know that for them, there’s life after the CCU. You hear them weigh their dessert options as the nurse reads from the menu. You’d love for your mom to have to ponder the merits of vanilla pudding vs. orange sherbet. High-protein-nutrition-with-fiber diets — via those ready-to-hang, enteral feeding containers — don’t demand such decisions.
You come to welcome diversions – especially in the form of all the good people who volunteer. There were lay ministers who were generically consoling and — in the case of Doylestown Hospital — even a strolling harpist.
But most of all there were the CCU nurses. Theirs is an obvious, special calling. They know their nursing, but no less important, they know their empathy. If anyone feels another’s pain, it’s CCU nurses.
And they treated my mom with dignity; so don’t settle for less. She was often unresponsive, but she was never less than an adult human being who had lived a long, productive life — and didn’t deserve to be “honeyed” and “sweet-hearted” in her final days as if she were a child in a car-seat.
My mother didn’t have a living will. As it turned out, it didn’t matter. Some people sign them when death still seems largely an abstraction. Staring into the abyss and/or focusing on the imminent afterlife matters more. A meaningful, right-now sense of the patient’s deathbed wishes matters most.
So, make sure you ask.
Somebody needs to step up — in those intervals between morphine and Ativan injections — and communicate with the patient. Where there are discernible head gestures – as well as eyebrow arching – there are wishes that can be conveyed. But it’s no time for ambiguity in the name of compassion. Be precise as well as tender and loving.
As the oldest – and with a window of opportunity – I asked my mother what needed to be asked. My brother Tim accompanied me. Context was critical. I prefaced the line of inquiry with reminders of her legacy: children, grandchildren, great grandchildren and special friends across the years. A life that mattered in so many ways to so many people. She was there for us, and now we were here for her.
In the end, it came down to: “Ma, do you want us to continue to do all this for you? Is this worth it?”
The answers, not unlike the responses to the previous questions, were clear. In this case, emphatic “No” gestures.
I swallowed hard, sobbed quietly and looked behind me. My brother’s head was bowed, his shoulders heaving.
Then we made sure everybody was on board. Hospitals don’t want a consensus or a super majority. They like unanimity when it comes to families’ quality-of-life calls.
My mother was as feisty and opinionated as she was classy and dignified. She wanted, I knew in my core, to go out on her own terms, having lived a full 83-plus years. She wanted to go out pain free – and with as much dignity intact as possible. As a young woman, she was strikingly pretty; as a septuagenarian widow who frequented seniors’ dances, she was always the woman most frequently asked to dance by all those outnumbered men. Quality of life was no abstraction to her.
I knew that. She knew I knew. But I made sure.
It was enough to remind me of that Will Rogers line: “It’s only the inspiration of those who die that makes those who live realize what constitutes a useful life.” And Ida Rita O’Neill led one of those.
And not that it needs underscoring, but here’s literally the last thing she uttered at the hospital — to my brother Mike: “Don’t forget about the chicken soup I made; it’s in the refrigerator.”
Translation: “I’m still your mother; you’re still my child. The soup won’t last much longer. Eat it. It’s good for you.”It’s what mothers do.
To the very end.