My dad has never been a physically strong man, but I had never seen him so weak before. His shirts, never well-fitting to begin with, hung almost tent-like from his frame; his jeans appeared so baggy that I could not even glimpse a body underneath. My mom told me that his new diabetes medication had suppressed his appetite and caused weight loss; the problem is that when you’re only 130 lb to begin with, there’s not much weight left to lose.
Women are the hardier of the species, and my mom is no exception. Even in her late 50s her skin is unblemished and her cheeks rosy, her hair healthy and black (albeit with the help of coloring, I’m sure). My parents are separated in age by only 5 years, but when they sit side by side during our Skype chats, the gap seems much wider. It sort of reminds me of those pictures of Bill Clinton and Barack Obama before and after their presidencies. They both entered office as vibrant and handsome 40-somethings and left as baggy-eyed, gray-haired 50-somethings, still handsome but in a more muted way. Although, knowing what I know about my parents, it seems unlikely that my dad has experienced 8 years of presidential-level stress that my mom hasn’t.
My dad looks frail now, and I don’t know what to say to him. I don’t know what to say to anyone about frailty. My friend’s father-in-law was recently admitted to the hospital after feeling unwell for a period too long to be explained by a cold or a flu; it turned out he had developed lymphoma (although apparently the prognosis is good). I wasn’t sure what to tell her besides the cliche that “It’s kind of scary to be reaching that age when you realize your parents are mortal”. She murmured in agreement and we left it at that.
In my defense, most people are bad at talking about death. That’s true even of doctors, who should be the best acquainted with it. Atul Gawande writes beautifully about the topic in his New Yorker essay “Letting Go”.
One Saturday morning last winter, I met with a woman I had operated on the night before. She had been undergoing a procedure for the removal of an ovarian cyst when the gynecologist who was operating on her discovered that she had metastatic colon cancer. I was summoned, as a general surgeon, to see what could be done. I removed a section of her colon that had a large cancerous mass, but the cancer had already spread widely. I had not been able to get it all. Now I introduced myself. She said a resident had told her that a tumor was found and part of her colon had been excised.
Yes, I said. I’d been able to take out “the main area of involvement.” I explained how much bowel was removed, what the recovery would be like—everything except how much cancer there was. But then I remembered how timid I’d been with Sara Monopoli, and all those studies about how much doctors beat around the bush. So when she asked me to tell her more about the cancer, I explained that it had spread not only to her ovaries but also to her lymph nodes. I said that it had not been possible to remove all the disease. But I found myself almost immediately minimizing what I’d said. “We’ll bring in an oncologist,” I hastened to add. “Chemotherapy can be very effective in these situations.”
She absorbed the news in silence, looking down at the blankets drawn over her mutinous body. Then she looked up at me. “Am I going to die?”
I flinched. “No, no,” I said. “Of course not.”
Gawande writes that the conversation about diagnosis and prognosis and treatment is almost a folie a deux. The patient and the family wants the doctor to “do something”, even if nothing worthwhile can be done. And when the doctor gives into these wishes — “flinches”, as Gawande puts it — he feeds the delusion. This experience is so common that doctors have apparently deluded even themselves:
A study led by the Harvard researcher Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive, and then followed the patients. Sixty-three per cent of doctors overestimated survival time. Just seventeen per cent underestimated it. The average estimate was five hundred and thirty per cent too high. And, the better the doctors knew their patients, the more likely they were to err.
My dad had a surgery today. He’s been suffering from low-grade pain for two months, and he eventually set aside his manly willingness to suffer and went to see the doctor, who diagnosed it immediately as a hernia and prescribed surgery. My dad is a quiet worrier, but my mom is a vocal one, and she kept my brother and I apprised of every step of the operation, from pre-op to the surgery to post-op to the ride home. She told us about the unexpected sac of fluid found during the surgical procedure, and what its official medical name was. Talking about the surgery, researching the condition on the internet, using the words that the doctors used — all of these things helped her cope with the fact that surgery is scary, even one as routine as for a hernia. Perhaps we have substituted questions of well-being and existence with talk of medicine and science, because the latter have a certainty and concreteness that the former lack. I just wanted to know whether my dad was ok and whether he’d be ok. But, if I had let her, my mom would have recited the entire WebMD page. As Gawande notes, doctors are no better.
Gawande later talked with a specialist, Dr. Susan Block, about what he did wrong in his conversation (the one with the woman with colon cancer). He writes,
One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake, Block said.
“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.
The men in my family have never been good at talking about our “many worries and real terrors”. I think if my dad ever had to give me “The Talk”, we would have simultaneously fled the room in opposite directions. But I do want to have the other Talk, before it’s too late: the one about life and death and when to choose one over the other. It’s not that they or I are in collective denial. My parents have thought about and written out an end-of-life directive; they have decided how their assets should be apportioned when they die. I will be well taken care of in their absence. They are incredibly responsible people, and if I am the same way it is because of their combined nature and nurture.
No, the reason I want to have the other Talk is that it might be an opportunity — the only opportunity — to talk about the things that we are reluctant to talk about when there is no fear of death. Gawande reports the story of an oncologist tasked with guiding a father through his son’s struggle against terminal cancer.
The oncologist went to the father’s home to meet with him. He had a sheaf of possible trials and treatments printed from the Internet. She went through them all. She was willing to change her opinion, she told him. But either the treatments were for brain tumors that were very different from his son’s or else he didn’t qualify. None were going to be miraculous. She told the father that he needed to understand: time with his son was limited, and the young man was going to need his father’s help getting through it.
The oncologist noted wryly how much easier it would have been for her just to prescribe the chemotherapy. “But that meeting with the father was the turning point,” she said. The patient and the family opted for hospice. They had more than a month together before he died. Later, the father thanked the doctor. That last month, he said, the family simply focussed on being together, and it proved to be the most meaningful time they’d ever spent.
I want to have that meaningful time with my folks, and not when they’re strapped to a hospital bed in a debilitated state. I want to ask my mom if she ever regretted traveling to another country and giving up her career for a man and a relationship. I want to ask my dad how his years in grad school shaped him when he was young, alone, and living in a country so overwhelmingly white and big and distant and unforgiving. I want to ask my parents about their regrets and their successes. I want to ask them how they think life would have been different, better or worse, if neither my brother nor I had been around. And I want to ask them about frailty, and when it dawned on them that they, too, were frail. Not just in the physical sense, of aches that don’t subside as quickly as they used to. But also in the more abstract sense, of realizing that their powers were declining, that the world’s possibilities were closing, and that they couldn’t achieve everything they had dreamed of in their youths. If the mid-life crisis is anything like the end-of-life crisis, it is in these realizations. I don’t mean to suggest that I’m suffering from such a crisis, but it is slowly and unfortunately dawning on me that the next 20 years of my life will be more challenging than the previous 20-odd years. And I would like to draw upon the strength and wisdom of the people who have already experienced and come to grips with that.