Informed Consent

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by Miller, Melissa F.


  “Wait just a minute. The reason her brain tissue wasn’t sampled was because I’d entered an order prohibiting the autopsy. Right?”

  “I can’t answer that.”

  “I can, your honor,” Sasha volunteered. “It’s beyond dispute that Dr. Allstrom knew taking brain tissue was against Mrs. Chevitz’s wishes because her personal physician told Dr. Allstrom as much. In addition, there’s also no question that Dr. Allstrom fully intended to harvest Mrs. Chevitz’s brain tissue notwithstanding that fact. Dr. Allstrom instructed a graduate student to go into the lab early on Saturday morning to wait for the brain tissue to arrive.”

  Sasha paused because Allstrom and Martinello were engaged in a furious whisper fight.

  “Counsel, that’s enough,” the judge barked. “Zip it.”

  Attorney and client both zipped it, and the judge nodded to Sasha, “Go on, Ms. McCandless-Connelly.”

  “So while the narrow issue covered by the TRO may be moot, the larger issue remains: Dr. Allstrom doesn’t seem to believe she needs consent to perform post-mortem brain autopsies and she’s willing to go forward with one even when she has actual knowledge that the patient in question would not consent. This is abhorrent. It cannot stand. So, we’d like the court to extend the existing restraining order to permanently cover every research participant enrolled in Dr. Allstrom’s study.”

  “You want me to make the order permanent?” the judge echoed.

  “Either that or order Dr. Allstrom to go back to each participant and explain the brain tissue harvesting and obtain a second, specific informed consent.”

  Martinello interrupted, “Your honor—”

  “Let me finish, counselor. First of all, I don’t think Dr. Allstrom’s reading of the Common Rule is a fair one.” Sasha gestured toward Naya, who somehow anticipated what she needed and pressed a copy of the CFR into her hands. “The regulations make clear that the key element in the informed consent process is transparency. Study participants must be adequately informed and must be given specific, detailed information. In this case, transparency demands that each prospective patient be told that, depending on the results of their blood tests, there may be a need or desire to take post-mortem brain tissue specimens. Dr. Allstrom didn’t do so. It may well be true that the Common Rule doesn’t cover specimens obtained post-mortem, but the Uniform Anatomical Gift Act does. Dr. Allstrom didn’t limit herself to specimens donated under the UAGA. No, she enrolled living patients in a study, obtained consent for the first portion of her work without telling them her ultimate goal, and then waited for them to die. That’s not acceptable.”

  “I agree with you there, Ms. McCandless-Connelly. But presumably this research is important and in the public good, right?”

  “Absolutely!” Martinello interjected. “Dr. Allstrom will be happy to testify as to the extremely beneficial anti-dementia supplement she’s created. In addition, if Ms. McCandless-Connelly would kindly stop interfering, the doctor is poised to take her research to the next level. She’s close to a breakthrough that would enable dementia sufferers to undergo a cutting-edge procedure to have the supplements applied directly to the myelin sheath via nano-robotic delivery. It’s an amazing advance. And the only hurdle left to clear is the study of brain tissue taken from people such as Mrs. Chevitz.” He took a moment to turn and glare at Sasha for effect.

  “Dr. Allstrom,” the judge addressed her directly, “isn’t the simplest solution here to simply go back to the subjects and explain the next phase? Those who wish to consent can sign supplemental informed consent papers now, and then there’s no question as to whether you’re complying with the spirit of the law?”

  “Well, your honor, that’s problematic,” Allstrom stammered.

  The judge arched an eyebrow and waited. Allstrom turned to her attorney.

  “Going back to the subjects now could raise more questions than it answers,” he said.

  “How so?”

  Martinello cleared his throat. “Some of the subjects have advanced dementia, judge. They don’t recognize their kids or know what year it is. If they were to sign off on a brain autopsy, an industrious attorney such as Ms. McCandless-Connelly over there will just come into court and claim they lacked the ability to consent.”

  Sasha would have bristled at his tone, but the substance was true, so instead she agreed. “I might. But that’s no excuse to circumvent the informed consent process. It doesn’t exist for the researcher’s convenience; it exists for the subject’s protection.”

  Judge Nolan now appeared to be equally irritated with both sides. “I’m inclined to extend this order, but I’m not making it permanent. Ms. McCandless-Connelly, you have three days to get me some actual statistics—how many people are affected by this? Of the enrolled patients, how many have confirmed dementia diagnoses? How advanced are they?”

  Naya was scribbling furiously, taking down the directions.

  “Yes, your honor.”

  “Mr. Martinello, your client is to halt all brain tissue harvesting for seventy-two hours. Is that clear, Dr. Allstrom?”

  Allstrom’s skin was so pale she was almost translucent. Her hands shook, but she nodded her understanding. “Yes, your honor.”

  “One more thing, Ms. McCandless-Connelly. Don’t you dare show up here without a witness on Thursday.”

  34

  Al Kayser turned his head gingerly, first to his left, then to his right, testing his range of motion. His neck was sore and stiff, but the pain in his skull had begun to subside. He tried to lift his hand to probe the lump on his temple but the restraint held taut. He’d forgotten he was tied down.

  He stopped struggling and surveyed the room. Judging by the light leaking in around the edges of the blinds it was late morning—at least four hours had passed since he’d been attacked.

  It had happened so quickly. He’d parked his old Volvo wagon in Golden Village’s staff parking lot, back behind the cottages, leaving the more convenient visitors’ spots open for any family members who might be coming to spend time with a resident. His plan had been to pay a quick visit to Mr. Chester before heading into his office to catch up on paperwork for an hour or so before meeting Sasha and Naya at their office. As plans went, it was a fine one.

  Davis Chester and Adina Chevitz had been next-door neighbors in the independent living cottages before Adina had transferred to the main building for her final weeks. Davis, a retired florist and an avowed atheist, and Adina had forged a close friendship despite their disparate backgrounds. They shared a love for jigsaw puzzles and had been working on a five-thousand-piece beast of a puzzle, a landscape of a coastal lighthouse, when Adina had started having trouble breathing.

  Al had been the one to break the news to Davis. Adina’s persistent cough and worsening shortness of breath were signs of pneumonia. Davis had looked at him over his half-moon glasses with a hopeful expression. “Once her lungs clear, she’ll move back into her place, though, right?” he’d asked.

  Al hadn’t made any promises, and, despite Davis’s optimism, the man had been at Golden Village long enough to know that trips to the nursing care facility were almost always one-way tickets. In fact, the cottage residents privately referred to the main building as The Hotel California for that very reason.

  He’d stopped by yesterday to tell Davis that Adina had passed away. The depth of the man’s sadness had taken him by surprise. Most of Al’s patients had reached the season of life where the death of a friend was the rule, not the exception. Just as young adults go through a phase when all their friends seem to be getting married, Al’s patients—particularly those who lived in community arrangements such as Golden Village—attended a lot of funerals. Death in a retirement home was just a fact of life.

  But Davis’s grief had been powerful. Al had sat with him for nearly an hour. They’d completed the entire lower left corner of the puzzle while trading stories about Adina. When he’d left, Davis had looked at him with heavy eyes and said, “Will you come tomo
rrow?”

  And so he had.

  He’d been crossing the path between Davis’s unit and Adina’s now-vacant one when footsteps sounded in the gravel behind him. He turned, expecting to see a personal care aide juggling an armload of linens or a janitor hauling a mop and bucket. Instead he found himself staring into a massive barrel chest. He’d had time to register that the chest belonged to a mountain of a man, nearly a full foot taller than he, before the blow to his head dazed him. He wobbled on his feet. The man caught him and carried him across his arms to Adina’s unit as if Al were a child, not a one-hundred-and-eighty-pound adult.

  Now, as he lay in the hospital bed, each arm tied to a side rail, he felt more rage than fear. He was angry with himself for being so easily overpowered. And he was angry with his enormous captor, whomever he was, for causing him to miss the hearing. That’s not to say that he was unafraid. He was anxious, to be sure. And worried. But the surprise attack had an absurd quality to it that made his situation seem unreal.

  Reality hit him squarely when the man returned. His heavy shoes struck the metal steps outside in a loud, rapid staccato burst.

  Al turned to face the door as it opened inward, and the man ushered a slight, white-coated woman into the room. Then the man crossed the threshold and snicked the door lock into place.

  Al stared in amazement at Dr. Allstrom.

  “What are you thinking?” he demanded.

  She gaped back at him, white-faced with fear. “I … what’s going on?” She wheeled around to the hulking man behind her. “Derrick? What’s this about?”

  “You called the fund. You asked for help. Well, now you got it.” He squinted, hard-eyed, at her and then gestured toward the bed where Al was trussed up. “You need a control brain, right? An aging person with no signs of dementia?”

  “That’s correct? But, what’s that have to do with Dr. Kayser?”

  Derrick shook his head. “They said you were slow on the uptake. This doctor has been interfering with your research, hasn’t he?”

  She hesitated. “I guess so. But holding him hostage won’t solve anything. The judge extended the restraining order. I can’t—”

  “Look, lady, there’s more than one way to skin a cat. And more than one way to slice a brain.”

  “I don’t follow you.”

  Al did. They—whoever they were—had decided to help Dr. Allstrom’s research along by delivering up a healthy brain: his.

  As his heart thumped in his chest, comprehension flooded Dr. Allstrom’s face.

  “Oh, no. No,” she moaned.

  35

  Leo said his goodbyes to Annabeth and drove home on autopilot. His conversation with her had confirmed his worst fears about Duc Nguyen. His father was a murderous gangster who’d escaped justice. And now Leo knew what he had to do next.

  At a red light, he dug out the telephone number his father had given him and activated the Bluetooth. As Doug Wynn’s telephone rang, Leo focused on keeping his breathing even.

  “Yes? Hello?” Wynn sounded older and weaker than he had just a week earlier.

  “It’s Leo.”

  “Yes?” he said in a neutral, mildly interested voice.

  Leo had to give grudging respect to the man. He wasn’t going to grovel or beg, no matter what.

  “I’ve been doing some research. And I’ve been thinking.”

  “And?”

  “And I’m willing to make the donation if the hospital here in Pittsburgh accepts you as a patient and clears me as a donor.” He glanced down and realized he was gripping the steering wheel so hard that his blue-green veins were protruding from the skin on the underside of his wrists. He relaxed his hold.

  “That’s not a problem. My doctor has already been in contact with the UPMC transplant program. We assumed that if you agreed, it would be best to have the surgery where you live.”

  “Oh.” Leo said, mainly because he didn’t know what else to say.

  “I think you should call the donor coordinator and let her know. Her name is Angeline. I have the number here somewhere.”

  Leo listened to the sound of papers shuffling for a moment then said, “I can find it on the internet.”

  “Very good.”

  The prosaic conversation was completely at odds with the emotions coursing through Leo’s body. He’d never understood when someone had described an event as being ‘surreal,’ but now suddenly he did. He concentrated on keeping the SUV on the road.

  “Okay, well, I guess I’ll let you know what the transplant program says. Or they’ll contact your doctor. I’m not sure how it works, to be honest.” Leo realized he was babbling.

  “It will work out. Leonard?”

  “Yes.”

  Doug Wynn paused for a moment. Leo could hear him breathing, ragged and shallow, on the other end of the phone. Then he said, “Thank you, son.”

  * * *

  “You did what?” Sasha held the phone away from her ear for a moment and inspected the handset as if it were somehow responsible for the words Connelly had just uttered.

  “Sasha—”

  “You agreed? You called your father and said, yes, sure, you can have my liver. Why would I want to involve my wife in this sort of decision?”

  “I get that you’re mad,” he said in an evident attempt to stem the tide of anger in her voice.

  “Do you? Then do you want to explain why you did this? Why did you commit to having the surgery without at least telling me first?”

  She couldn’t fathom why he’d called her in the middle of the workday and dropped this bomb in her lap. She took three deep breaths—cleansing, centering breaths, as her yoga friends would say. Afterwards, she felt oxygenated but no less irate.

  “Listen, okay? All I’ve agreed to at this point is to begin the process. That’s it. If he comes here and the doctors at UPMC say he’s a good candidate for the surgery and the transplant team says I’m a qualified donor, then I’ll have to make a final decision. There are a lot of hurdles to clear before I’m lying on the operating table. I just … I didn’t want him to die while I was trying to decide what to do. I don’t want that on my conscience, Sasha.” He finished in a soft voice.

  Her anger deflated. “Okay, that’s fair,” she conceded. “But I don’t have to like it.”

  “No, you don’t.”

  “Does this mean Hank came through with information about Duc Nguyen’s background that gives you comfort?”

  Leo was silent for a moment then he said, “Not exactly. It’s a long story, but let’s just say I found out what I needed to know. I can fill you in some other time.”

  That struck her as a strange non-answer. She might have probed the subject further, but just then Naya pushed open her door and said, “Dr. Kayser’s on hold. Do you want to take it or should Caroline transfer him to my line?”

  “Hey, my MIA witness just materialized. I have to go,” Sasha said to Connelly, holding up a finger to ask Naya to wait.

  “I love you.”

  “I love you more.” She ended the call and looked at Naya, “Come on in. We’ll put him on speaker. This better be good.”

  Naya pulled the door closed behind her and flopped into the nearest chair while Sasha pressed the button to pick up Dr. Kayser’s call.

  “Dr. Kayser? This is Sasha. I’m putting you on speakerphone because Naya’s here, too,” she said.

  “That’s fine. Hello, Naya.” His voice sounded scratchy and forced.

  “What happened this morning? Where were you?” Sasha asked.

  “I came down with something. Perhaps the flu.”

  Naya tilted her head and gave Sasha a confused look as if to say ‘he was too sick to call and let us know?’ Sasha nodded. The explanation was wholly unsatisfying.

  “We were worried about you. And I’m sorry to hear that you’re not feeling well, but the judge was very unhappy. It would have been nice if I’d been able to tell her you were ill.”

  “I apologize. I was … indisposed.”<
br />
  Sasha waited but he didn’t elaborate. She considered that maybe she didn’t want to know the details. “Okay, well, take care of yourself and get better as quickly as you can, please. We scored a temporary victory. Judge Nolan did extend the restraining order, but she’s scheduled a hearing for Thursday. We need to provide her with specific information—how many people are enrolled in the study, how many are currently diagnosed as having symptoms of dementia. We have a good bit of work to do over the next few days.”

  He coughed. “I don’t think you should count on me for the data or for the hearing, for that matter.”

  Naya leaned toward the phone and projected her voice. “Dr. Kayser, you aren’t serious, are you? We need your help. Your patients need your help.”

  “I understand but it’s beyond my control. Maybe Doctor Craybill can help you?”

  “Dr. Craybill?” Naya parroted.

  The sound of metal scraping across a wood floor and then muffled voices filtered through the microphone. After a moment, Dr. Kayser spoke again in a strained, nearly unrecognizable voice. “I have to go.”

  A loud click signified the end of the call.

  Sasha and Naya looked at each other in silence. Naya pulled her hands through her short hair. “What in the ever-loving name of Caesar’s ghost was that about?”

  “Caesar’s ghost?” Sasha couldn’t resist asking.

  Naya tossed her head impatiently. “Carl says it whenever the Steelers fumble. Can we focus here? Who the devil is Dr. Craybill?”

  Sasha shrugged. “Your guess is as good as mine. He doesn’t have a partner in his practice. And the only Craybill I know is a former client up in Firetown …” She trailed off and rubbed her eyes.

  “What is it?”

  “Jed Craybill isn’t a doctor. Judge Paulson appointed me to represent him.”

 

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