Louis Washkansky and the Western
On December 3, 1967, Louis Washkansky, a Lithuanian-born Jew turned South African immigrant, received the world’s first human-to-human heart transplant. In an operation lasting roughly six hours, Cape Town doctor Christiaan Barnard led a team of thirty surgeons (including his brother, Marius), anesthetists, and nurses in replacing Washkansky’s worn, clogged heart with a twenty-five-year-old equivalent in mint condition. It had belonged to Denise Darvall. She was a young bank clerk, with a raven-black bun and deep-set eyes (I pored over the few existing photos of her in library archives one afternoon). Hit by a car while crossing the street that December day, she was pronounced brain-dead on the scene and donated an organ that would cement itself in medical history.
At the urging of Washkansky’s longtime family physician, Christiaan Barnard set aside time before the surgery to meet with Washkansky and his wife, Anne, to discuss expectations and concerns regarding the novel procedure. Barnard recounts how he found the patient sitting up in bed reading a Western:
“Mr. Washkansky, I have come to introduce myself. We intend doing a heart transplant on you—and for this you will be admitted to my ward.”
“That’s fine with me. I’m ready for it,” Washkansky replied.
“If you like, I can tell you what we know and don’t know about this,” I went on.
Washkansky nodded and waited for me to go on. He was obviously very sick, but you could see he had once been quite strong and good-looking. There were also the features of a generous man—a large mouth with the face folds of one who smiles often. He had big ears and big hands, and his eyes, gray-green—peering at me over spectacles—were waiting. So, I spoke to him.
“We know you have a heart disease for which we can do nothing more. You have had all possible treatment and you are getting no better. We can put a normal heart in you, after taking out your heart that’s no longer any good, and there’s a chance you can get back to normal life.”
“So they told me,” Washkansky replied. “I’m ready to go ahead.”
His eyes remained on me with no indication he wanted to know any more. . . . As I turned to go, he began reading again. How, I wondered, could he return to pulp fiction after being suddenly cast into the greatest drama of his life? What is it about human nature that caused such a reaction? No man in the history of the world had ever met the surgeon who was going to cut out his heart and replace it with a new human one—at least, not until this moment, which was now being lost somewhere in a Western novel.
I had offered him . . . life. Yet he had not asked the odds, nor a single detail.
The surgery was a success. The heart with a young woman’s past was perfusing the old man’s organs as the surgeons closed up. Washkansky lived for another eighteen days, just enough time for him to sit up and speak with the press before his immune system, perplexed and overburdened, gave out. The fate was a surprise to no one: The medical team knew full well the inherent risk involved, and the reality that they themselves were entering a Wild West; the transplant was a shot in the dark, the odds in no one’s favor. A surprise to no one, that is, except Washkansky, cold in the morgue, and his wife, who’d initially felt they’d been the recipients of miraculous fortune. A new beginning was, in the end, merely an encore.
Now, I’ll take you back to the present. In his book The Silent World of Doctor and Patient, Jay Katz recounts this story of the first heart transplant as part of a discussion on informed-consent practices—particularly those of which he took a dim view, like Barnard’s.
Katz’s book came to me by way of a woman central to this book, Helen Haskell, in February 2018. We spent Valentine’s Day on the phone, talking about this world of omissions and miscommunications between patients and medical providers. It was a world she found herself in when her teenage son died from medical error at a South Carolina hospital in 2000 (the full story lives in chapter 20). In some ways, things haven’t changed, we concluded. It’s still difficult to communicate with providers. We’ve all got a bit of Washkansky in us when it comes to unknowns in the world of medicine.
Washkansky, awaiting the first-ever heart transplant, was about to enter a heroic, unpredictable Wild West of his own, and yet he approached his predicament like the storybook in his hands. Today, patients watch medical encounters unfold around us in precisely the same way. When we cross the threshold into the healthcare world, it’s easy for us to assume that medical providers are omniscient, omnipotent, and totally in control of our well-being. In turn, it’s not uncommon for us to relinquish our voice and behave like characters (rather than real, flesh-and-blood, feeling people) in a narrative over which we have no control. Instead of confronting the chaotic and uncertain landscape into which we are thrown when we get sick, we often prefer, like Washkansky, to escape to fictional landscapes in which we are voyeurs rather than active participants, where the characters’ fates are predetermined and the author is in control of the plot.
As modern patients we tend to watch medical encounters unfold in precisely the same way. We hand over the reins. We tamp down our voice. We count on the narrative arc. And yet when we take a back seat rather than an active role in deciding our fate within the healthcare system, it may end up determined by outside forces that are essentially ambivalent.
The crucial aspect of rewriting this story is to learn how to talk to providers. It is to learn how to ask questions so that you feel informed and confident in your medical decision-making. Whether going under for an experimental transplant or getting a Pap smear, this task is essential.
The following sections will give you a framework for how to talk to providers and will hopefully make the affair more pleasant and less intimidating. But first—now that I’ve forbid you to escape to fictional landscapes—we’ll have to do it once more.
There’s a scene in F. Scott Fitzgerald’s This Side of Paradise that stays with me. The narrator, in the throes of young love, expresses a wish to bend tiny golden tentacles from his imagination to his love interest’s. I have always loved the image because it reflects those rare, sweet, satisfying moments in a conversation when you realize that you and the other person are on the same wavelength. Sometimes it feels like having a conversation with yourself. Sometimes you finish each other’s sentences or jump from topic to topic in a way that makes no sense to the outside observer, but makes complete sense to the two of you. It’s a transcendence born of being heard and understood. That golden tentacle is what you’re aiming for at your appointments.
Hopefully you’ve found a PCP with whom you have a good rapport, but you can still take extra steps to ensure you communicate well. The topics we’re about to discuss are geared toward any routine care appointments, but the ideas also lend themselves to communicating when something is wrong, or you have a chief complaint. They can be applied to topics in chapter 9, “Navigating Touchy Territory,” as well.
Medical appointments can feel like interviews. Providers are trained to use algorithms and deductive reasoning to get an accurate picture of what’s going on. Patients, in turn, endure the Q and A. This stiff back-and-forth is the main model we have for medical encounters. Like your average interview, it goes something like:
Exchange of pleasantries
Question and answer session
Exchange of pleasantries
But the visit should be more than comments about the weather, a brief synopsis of your health, and a Take care, now! at the end. An encounter with any medical professional should have more of the organic characteristics of a proper conversation.
We use questions to steer a conversation, change a topic or return to one, and help shepherd the person across from us through our thinking. Questions are a critical expression of a patient’s power.
Sociolinguist Nancy Ainsworth-Vaughn dedicated the latter part of her career to examining the specific ways questions alter the course of patient care. She reviewed thousands of hours of taped conversations between patients and doctors in the late eighties and early nineties, using standardized measures of “conversational maneuvers” to identify ways patients and doctors claimed power in conversations. She followed patient cases along the care continuum, some of them for several years, and traced the ways questions in early appointments overtly changed outcomes later on.
The modern medical encounter can be a hostile environment for questions. We’re less apt to ask one if we feel the listener is rushed or impatient. And even though we’re told since kindergarten that there’s no such thing as a dumb question, most of us are less likely to ask when we feel less knowledgeable about the subject matter than the answerer.
Questions are not just about asking for information, however; they give the listener insight into your worldview. They point toward what we value, what we find important or relevant, and what we need to know to move forward. This was the crux of Ainsworth-Vaughn’s findings: Questions and answers exchanged by patient and doctor early on incited greater understanding on the part of the physician and greater trust on the part of the patient, opening channels of communication that uncovered clues essential to diagnosis and the most beneficial treatment.
Recent scientific evidence corroborates this study, demonstrating that patients asking more questions is directly correlated to improved medical outcomes. For example, hospitalized patients who ask more questions during discharge have a lower chance of returning to the hospital. Diabetic patients who ask more questions at medical consultations have lower blood pressure and better management of blood sugar when compared to controls. So, ask more questions, especially open-ended ones.
By this I don’t mean that you should conjure up queries during your appointment to fill empty space or sound intelligent. But do raise your hand whenever you have a genuine question. These might include, Why do you say X and not Y? What would it feel like if I were experiencing X? What is the plan when I walk out the door today?
If you don’t understand why the provider is asking you a particular question, ask. If the provider’s line of thinking confuses you, ask them to explain it.
You can also use a question to rein a conversation back in when you realize it’s gone totally off course. If you notice the person across from you spinning off in a direction that indicates they didn’t hear or understand you, don’t assume your concern isn’t relevant. It’s okay to bring them back in by saying something like:
I might have miscommunicated this, but X is the biggest issue for me, and the thing that brought me in. Can we back up?
When receiving instructions, new prescriptions, referrals, or tests, ask yourself the following:
What is the problem?
What do I need to do about it now?
Why is it important that I do this?
What comes next?
If you don’t know the answer to one of these questions, ask for elaboration. If you’re worried that you might not remember, write it down in a notebook. If medical staff speak over you, impale you with too much information at once, or deliver information in a way that’s not accessible to you, they’re not fulfilling an important part of their job. It’s okay to ask for clarification. The best providers and nurses use the teach-back method, asking you to answer these questions in front of them. They do this to ensure they explained things adequately.
Next, think about how you like to take in new information. Do you need to see something drawn out for it to make sense? Do you prefer to listen or read? Are you likely to read up on something or do you want the bare minimum given to you straight? Many struggle with health literacy because information is transferred in a medium that doesn’t fit their learning styles. Luckily (and because there is a mass global initiative to improve health literacy in care delivery right now) hospitals and clinics will now ask on your intake paperwork how you prefer to receive information, so if verbal explanation isn’t your style, they can offer alternatives. If you know you’re not going to read through printed sheets, they may have videos, web resources, and pamphlets on hand to aid your learning. If this question doesn’t come up on intake, let the provider know during your appointment that you’d like other learning resources and materials.
Stories: Giving Yourself Context
Storytelling claims power. No more important claim to power could be imagined than that which aims to co-construct a diagnosis (entailing treatment) and at the same time define who we are and who we will be.
—NANCY AINSWORTH-VAUGHN
Don’t Go in Blind: There’s Not Enough Time
During medical encounters, establishing your identity by sharing stories that give you context and celebrate your personality is a power move. When implemented effectively, stories remind everyone around you you’re a human with a past, present, and future. You incite more investment from your medical staff and increase the likelihood that you will receive patient-centered care—care that carefully considers and respects each symptom, condition, or illness manifestation as pieces of your life.
Your provider’s window into your life can be as large or small as you make it. The more you contextualize and shed light on who you are, the less likely you’ll be to get lost in the shuffle and the more likely you’ll be to get attentive, generous care. Ample research shows that making yourself seem more human invokes greater empathy from care providers. The more insistent you are about being yourself, the more relatable you’ll be, the more they’ll attune to you.
Does this mean you should waylay your doctor or nurse with a chapter of your memoir every time they enter the room? No, don’t! But you should feel free to be yourself. Share stories when they’re relevant, provide information that gives you context, allude to the people, places, and things outside the office that give your life meaning.
When the provider comes in and asks, “Hi, how are you?” take it as an opportunity instead of just saying, “I’m fine.”
Say, instead, something like:
I rushed here from work, so I’m a little frazzled. I’m an elementary school teacher, and it was a busy day.
Great! I just biked here, and it’s beautiful out.
My dog is at the vet, so it’s been a day.
These all give you context, and who knows—your provider may be a parent. A cyclist. A dog lover, just like you.