Nothing Better than Silicon
A Tale of Surrogate Decision-making in Three Parts
Notes from a Family Meeting is a newsletter where I hope to join the curious conversations that hang about the intersections of health and the human condition. Poems and medical journals alike will join us in our explorations.
For those of you just joining, consider starting here to trace how I’ve been thinking about medicine and technology, a conversation I’ve been returning to time and again.
I
“Can I share my worry?” Dr. Wood licked her lips, apprehensive. She felt like she was on stage in front of a group of seven people, mostly other clinicians. Like a good actor, she had memorized the lines given to her.
A woman nodded. Her eyes were red. Her fists clutched tissues.
“Mrs. Danley,” Dr. Wood began and then added, “Mr. Danley. I’m worried we’re in a different place now. Things aren’t getting better.” A small tap on her wrist. She glanced down and read the words, “He’s not going to wake up.” A tap again, but she chose not read what was offered. She repeated instead: “He’s not going to wake up.”
“Well, there you go,” Mr. Danley’s voice was resigned, like we were expecting sunshine and got rain. “I know this is hard for you, Sara.”
The woman laid her face in her hands.
Dr. Wood had prepared the words, but hadn’t prepared herself. The emotion, so unquantifiable, made her uneasy. She cleared her throat. “Mr. Danley, I have to ask. What would you want right now, knowing everything you know?”
Mrs. Danley looked up. She reached out, and then let her hand fall into her lap.
“Hey, Sara. It’ll be okay. Look, this is no way to live. I don’t want this.” An image of Mr. Danley shrugged. “We had some good times, didn’t we?”
Mrs. Danley fell to her knees in front of a screen sitting on a table, the semi-circle of other people surrounding her and the image of her husband. “Nathaniel, please. Please don’t go. Don’t do this.”
“Hey, Sara. It’ll be okay.” The image of Mr. Danley shrugged again. The same words. The same shrug. The same lukewarm resignation to unanticipated weather.
“Wait, wait. Please stay. Please don’t go.”
“This is no way to live. I don’t want this.”
Sara put a hand over her mouth, still kneeling before the image of her husband on the screen.
“Mrs. Danley,” Dr. Wood spoke softly, “Mrs. Danley. He’s made his wishes known. You can stay here as long as you like. We’ll go take care for him.” Dr. Wood, like any other physician, presumed there was more of Mr. Danley in here than in a room just down the hall.
Sara looked at Dr. Wood, the door, and then back to the screen. She gasped. The image of Mr. Danley sat on the screen, face placid. “I…” Sara mumbled. Dr. Wood and the other clinicians left.
The room hummed with fluorescence. Somewhere out there, an alarm rang softly. Feet shuffled and voices murmured outside the door.
“Nathaniel,” Sara wiped her nose, “Nathaniel, do you remember that trip we took before… before my first pregnancy? Our kayaking trip?” Nathaniel sat, occasionally blinking or looking at something past the camera. “Nathaniel?”
The image froze, and a dialogue box popped on the screen: “MyMind Tier 3 is not available for general conversation and is only available for health care and financial decision-making. Do you wish to upgrade to Tier 2?” In smaller print: “Fees calculated at check-out. Delivery 1-2 weeks. Rules and restrictions apply.”
“No, no, no,” Sara reached up to the screen. The dialogue sat in front of Nathaniel’s now blurry face. “No!”
She slumped before the screen, prostrate, sobbing.
II
Trevor watched as nurses and technicians surrounded their newest admission. Data scrolled across a screen next to the window into his room, some of it collected by the staff, others the results of scans and blood work. The machine offered an order and Trevor accepted it. These orders wove themselves into the scrolling data. The staff in the room carried them out.
“They don’t call ‘em deathcycles for nothin’,” Samantha sighed, sipping coffee. “All alone. He’s lucky someone found him.”
“Lucky?” Trevor arched an eyebrow. Samantha smirked at the gallows humor.
“What’s he have to say about this?” She gestured with her coffee to a smaller console on the desk under the window.
“I haven’t asked yet. You want to do the honors?”
Samantha sat down her coffee and opened the console. The MyMind logo appeared on the screen and then a middle-aged man appeared. “Hello,” he said.
“Nathaniel Danley. I’m Dr. Wood,” Samantha began, “This is Dr. Zhao. You’ve been in a very bad accident.”
“Uh oh. That’s what I get for riding a deathcycle, huh?” Samantha and Trevor looked at each other. “Well, I was never much for computers, but I bet if you gave me access to my medical record, I’d have something to say about it. Or you can just tell me.”
Samantha snaked a cord from the console to its companion port on their hospital’s computer. The console screen flashed, and then the image of Mr. Danley whistled. “I’m not a doctor either, but those pictures don’t look good, and there’s a lot of red numbers in there. What are you doing?” After an initial roll-out that was frustrating for everyone involved, MyMind started giving artificial surrogates some basic medical knowledge even if the client was totally uneducated.
Samantha proceeded to summarize the clinical course thus far while Trevor monitored the team in the ICU room, occasionally giving an order. If Mr. Danley had created a newer MyMind, she wouldn’t need to summarize anything as it would just interface directly with the EMR AI for a contextual summary of diagnosis and prognosis, but a human needed to stay in the loop with these older models.
“So,” Samantha said, “Either we push really hard now and maybe there’s a chance you’ll survive, but with severe brain damage. Best case scenario you’ll spend the next several weeks in the hospital before we send you to a facility to live. You may not recognize anyone, you’ll need a care bot for all your needs. Um, that is if you’ve got long-term bot insurance. Or we focus on making sure you’re comfortable and you’ll die in a few hours.” She spoke in the nonchalant way most physicians had learned to speak with artificial surrogates.
“Wow. Well,” the image of Mr. Danley appeared to think, “This is no way to live. I want to be comfortable and die peacefully.”
“Great,” Samantha said, reaching to close the console.
“Dr. Wood,” the image of Mr. Danley reached toward the camera, “Sara’s gonna hate this. We’ve been married for, what’s the date? Six years now. Might not seem like a lot, but it is for us. Make sure someone’s with her.”
“Huh,” Samantha grunted in surprise before closing the console. “Alright, I’ll call the wife. Just keep things stable.”
“But we already got the decision,” Trevor protested.
“Yeah, yeah. Don’t do anything crazy, but you heard him. Let’s try to make it a little easier on her.”
Trevor nodded, giving an order for another blood transfusion recommended by the hospital’s electronic clinical companion. Samantha strode off to gather everyone for the less important meeting. Her coffee sat forgotten next to Mr. Danley’s console.
III
“What is your favorite childhood memory?” Eating caramel apples with my sister before trick or treating.
“If you had to choose, are you a cat person or a dog person?” I used to be a dog person, now I’m a cat person. Love ya’, Socrates. No offense, Caesar, RIP.
“If you were in a coma and the doctors didn’t think you’d wake up, would you want life-sustaining treatments to be continued?” Cutting right to it, aren’t you? Well, that’s no way to live. I wouldn’t want that.
Nathaniel thought this was neat at first, but after three hours of answering innumerable trivia questions about himself, he was starting to wear out. He just had to make it through this and then on to a perfect evening. The things I’ll do for love, he thought. Sara had been bugging him for years to get an advance directive together, but it turns out no one does those anymore. They use MyMind simulations. Nathaniel and Sara could only afford the lower tier, but that’s all they needed.
The progress bar on the screen indicated he was 82% complete.
Questions about his childhood, his preferences, his secrets were mixed with inquiries about his health. A few offered two or three options from which he’d make his choice, but most were prompts to which he spoke his answer into a microphone.
“Do you always take your medication?” I don’t take medication. I guess if I did, I’d probably forget unless Sara reminded me.
“Did you ever drink alcohol before the age of 21?” Drank, smoked. Quit smoking. Still enjoy a drink every so often.
“Would you rather be awake but in pain, or asleep and comfortable?” Wow, what a choice. Um, if I could talk with Sara, sure, I’ll deal with some pain. If I don’t know what’s going on, put me out.
When Nathaniel answered the last question, a technician joined him. “All done now, Mr. Danley. Based on the package you selected, we should have things ready for you in about a week. You won’t need to come back. Just log in here.” She slid a plastic card in front of him on the table. “Some people have that printed on a medical alert bracelet. We have a few clients who have it tattooed on their arm! Just make sure it’s easily accessible when needed.”
“Thanks. Hope that won’t be for a long while.” The technician nodded and smiled.
Nathaniel had only been in the lobby for a few minutes when Sara arrived. “How’d it go?”
“I think they have enough for a clone. You better watch out! Is this the real me?”
“Oh stop!”
“I’m starving. I’ve got just the place picked out for dinner.” Nathaniel twirled a ring in his pocket. He was already forgetting the day’s trudge through questionnaires. Time to live the rest of his life with the woman he loved.