My mother is no dummy. Far from it — she’s a woman of ravenous intelligence. But she just doesn’t believe she’s going to die. Ever. She can’t get her head around the finality of death, any more than she can grasp the vastness of infinity, a concept she keeps trying to get my physicist son-in-law (or really, anyone with a college degree within earshot) to explain.
“I’m simply not going to die,” she likes to say, as if she’s joking. But part of her believes it, and she admits as much. All the plans she’s made about her own death — pre-paying her own cremation, giving us instructions about how to hold the memorial service, showing us where the important papers are hidden — have been a kind of voodoo incantation, she knows. If she plans for death hard enough, maybe it will never happen.
This self-conscious denial was at the heart of the conversation my brother, my husband and I had with our mother the other night. It went as well as could be expected, under the circumstances. Which are this: my mother, who is not quite 85, has aortic stenosis, a narrowing of the heart’s aortic valve, and her cardiologist has just told her that it’s time now to think about open-heart surgery to replace the valve.
Over take-out Thai food, we were trying to help her think through the pro’s and con’s. She’d been told there was a 4 percent risk she would die on the operating table. Her instinct was to reject that risk. “No surgery,” she had said when the cardiologist first raised the matter. “I don’t like that 4 percent.” She shook her head, as though she believed that without the surgery, the risk of dying were zero.
But it’s not zero, of course. Without the surgery, the damaged valve will get worse, slowly constricting blood flow from her heart to the rest of her body, and there is a 50-50 chance that she will die within two years.
I was sitting next to my mother when her cardiologist gave her those odds. “Five-oh?” she asked, her voice tight. I saw her turn white when it suddenly hit her that even though she feels basically fine, she is seriously ill.
The clue that the stenosis is worsening lies in how many times she has to stop to catch her breath walking uphill from her apartment on West End Avenue to the bus stop and shops on Broadway. “What if I just don’t walk up the hill?” she asked the cardiologist. And asked me, in our near-daily phone calls. And asked my brother, a doctor himself, who she hoped would give her a different answer, a better prognosis.
My brother tries to explain that it’s not about walking uphill; her breathlessness on exertion is merely an indication of how damaged her heart valve is. Even if she stands perfectly still, the damage will progress.
We didn’t resolve anything at dinner that night. How could we? None of us knew what the right choice was. I had asked the cardiologist, in a follow-up phone call, what he would recommend if this were his mother, and he gave me a slightly confusing answer: he said his own mother-in-law faces the same choice and has decided not to have the operation. “But she is older and frailer,” he added, “so the situation is different.”
My mother sighed when I told her this. She is just old-fashioned enough, despite her rebellious nature, to wish for a time when a doctor simply told you what to do and you did it.
My brother called our dinner gathering an intervention, a way to get our mother to focus on her options with a little more clarity. But people who engage in interventions for their loved ones - usually people with drug or alcohol abuse problems — know what the next step must be. My brother, my husband and I do not.
What our mother confronts now is an impossible choice: an immediate, relatively low risk of injury or death during five hours of grueling surgery, versus the long-term risk — those 50-50 odds — of gradual disability and death over the next few years. On balance, she’s more likely to live longer and feel better with the operation, if she survives it. But if your bottom line is choosing the easier way to die, as it is for my medically trained brother, it might be wiser to stay away from the operating room altogether.
Numbers and statistics aren’t the whole story, anyway. “This is silly, you’ll laugh at me,” my mother told us, her denim-blue eyes glistening. “But I feel like if I do die, I don’t want it to be because of something I decided, something I did.”
It’s not silly at all, we told her. It’s as good a reason to make a decision as any. Still, as the evening ended and we sipped our decaf, we tried to help her see that not to decide was a decision, too. And not necessarily one based on denial; it’s often a perfectly fine choice just to let nature take its course. The quandary comes when you’re my mother and you keep bouncing between two incompatible points of view.
On the one hand, she wants to avoid the scary operation and the harrowing recovery. On the other hand, she wants to do whatever it takes to live as long as she can. She knows she can’t have both.
My brother, my husband and I will honor whatever decision she makes. But I hate that she has to make this huge life-and-death decision essentially alone.
We’re making plans now to see a few heart surgeons, just to gather information. My mother, with her spiky curiosity, has always been a big fan of information-gathering, relentlessly asking “Why?” and “How?” But this is one time, it seems, that she’d prefer no information at all. There are days when she says she’d rather just stay indoors, avoiding the climb up the hill to Broadway altogether in hopes of hanging on a little longer. She knows this is magical thinking. She yearns for magic, and so do I.
