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To Donna Prince, my caring aunt, my dad’s beloved sister, and a dear friend to us both
Love and compassion are necessities, not luxuries.
Without them humanity cannot survive.
—DALAI LAMA
CHAPTER 1
You really don’t know what you’ve got till it’s gone.
On nights like this, when Walter McKenna could barely get air into his lungs, and each breath came ragged and raw, the lyrics from the Joni Mitchell tune popped into his head and he’d grimace, thinking she was right. Damn right. In Walter’s case, it was heart disease that had paved over the paradise of his good health. It zapped most of Walter’s remaining strength and left him perpetually exhausted.
With great effort, Walter managed to sit up in his hospital bed. He had to do something to take the pressure off his bedsores—decubitus ulcers, his doctors called them—that had again formed on his buttocks and back.
Even in this new position, Walter felt them rubbing on the bedsheets. The pain brought him to tears. To keep new ulcers from forming, Walter endured daily chemical debridement. But that was better than the hives that had broken out a few weeks ago. Those were brutal little suckers. The pale red bumps came on like a speeding train, coating his entire body, and causing horrible itching that antihistamines could barely subdue.
If he were back home, Walter could at least enjoy some familiar comforts, but he was long past that possibility. Walter cursed softly. The hospital was his home now, and had been for months. Tomorrow’s debridement was just another bit of suffering to add to his growing list of miseries.
He shifted position again, but it was impossible to get comfortable. His legs and arms were weighted with so much fluid he felt like a human water balloon. He also felt intense pressure on his bladder, and relieved himself into his catheter. Peeing into a tube, shitting into a bedpan: this was life with end-stage heart disease.
In the morning, Melinda, Walter’s wife of twenty-five years, would show up and they would watch television together and talk pleasantly during the commercials. She would bring him updates from the high school track team where he ran as a boy and coached as a man, and this would make him feel both happy and sad. She would try to hold his hand, but his fingers were stiff and achy, grotesquely engorged, and it hurt to be touched.
Now, just the thought of Melinda tightened Walter’s chest, squeezing his heart. He made a loud sucking sound through his oxygen cannula, like the last gasp of a dying breath. But it was not his last gasp. Even though Walter’s arteries were clogged with plaque, the surrounding muscles starved for oxygen, and his ventricular function had downshifted from a sprint to a limp, he was still very much alive. A permanent resident in what he morbidly referred to as God’s waiting room.
When the figure appeared in the doorway, Walter wondered for a second if he were dreaming. But the pain was present as always, and thank goodness his dreams were not that cruel. Still, doctors rarely stopped in at night unless they had good reason. Walter listened to the beeps, hums, and buzzes—the white noise of all the monitors attached to him—without a sense that anything was abnormal.
But the doctor was here, so Walter figured he had to have a good reason. This doc wore a waist-length white lab coat, a crisply pressed shirt, and a bold red tie. He was Walter’s hospitalist, a specialist in administering general medical care to hospitalized patients. Lots of different hospitalists looked after Walter—so many, in fact, that he had taken to calling all of them Doc.
“What’s up, Doc?” Walter croaked. He needed a sip of water, but was too weak to reach the glass himself. Doc noticed and gave Walter a drink.
“Just making rounds,” Doc said.
“This late?”
Doc said nothing. From a black leather medical bag, Doc removed a bag of medicine, some clear liquid, and hooked it up to Walter’s IV.
“Hey, I’ve got more bags hanging on that IV tree than a luggage carousel at Logan. What’s with the new meds?”
Doc returned a half smile. “Just a refresh of your ACE inhibitor,” he said.
Walter, who’d taught high school physics for more than two decades, had little trouble absorbing all the medical jargon tossed his way. The angiotensin-converting-enzyme inhibitor would lower his blood pressure by decreasing oxygen demand from the heart. It was all duct tape and glue to keep a leaky vessel afloat another day longer, but Walter preferred that to the alternative.
Doc titrated the new IV medication and did a quick check of Walter’s vitals.
“How you feeling, Walt?” Doc asked.
“Like I’m dying,” Walt said.
“Everyone is dying, Walt. We’re just moving at different rates of speed, is all.”
Walter could not argue there.
“Any unusual discomfort?” Doc asked.
Walter paused, as if he could have a new pain to which he was not yet attuned, but, no, nothing was out of the ordinary. He said as much.
“So, any big plans for tomorrow?” Doc’s tone was a bit too sardonic, but Walter appreciated any hint of levity, even if it was gallows humor.
Several loud beeps rang out, and Walter’s EKG burst into an erratic series of peaks and valleys.
“Just the meds kicking in,” Doc said as he adjusted something on Walter’s EKG monitor. “I gave you a big dose, so it will take effect right away.” Walter’s heartbeat revved up several notches. His lungs, already thick with fluid, felt as if they’d been put in a vise.
The evening nurse popped her head in. “Oh—hi, Doctor. I was just checking on him because his monitor is alarming.”
“Thank you, Judy. We’re all set here. With his paperwork, I mean.”
The nurse returned a look of grim acknowledgment that set Walter on edge. Paperwork. Walter thought he understood the reference. Alarms were a constant on this floor, and he had a signed DNR that meant caregivers were not to perform CPR if his breathing should stop or his heart stop beating.
I’m having a reaction to the meds, Walter thought in a panic. Got to relax. Take it easy. I’m not ready.
“What’d you give me, Doc?” Walter asked. A stab of chest pain took his breath away.
“Just a little something to take care of people who have no business living,” Doc said.
Walter waited for a hint of a smile, some indication this was Doc’s tasteless humor on display once more, but his expression was cold as stone. Walter glanced toward the doorway, hopeful the nurse would reappear, but she had already left, probably headed back to the nurses station. No rush. No urgency. Damn that DNR.
Walter found himself gasping for breath. His body grew hot, and sweat blanketed his forehead. Gripping the bedsheets like a horse’s reins, Walter tried to slow the canter of his heart.
“I feel kind of funny, Doc,” Walter wheezed.
Stinging drops of perspiration rolled into Walter’s eyes. The pressure on his c
hest intensified. Walter took in several sharp, short breaths, but could not seem to fill his lungs.
A sharp, crushing pain took away what little breath remained. Unable to speak, Walter pawed the air, trying to get Doc’s attention. A wave of nausea overtook him, and a strange pressure built up at the base of his neck. Walter’s fingers turned a horrifying shade of dark violet. The gurgling in his lungs bubbled up to his throat. His heart skittered with irregular beats. A spasm of coughing shook Walter’s ribs so violently he thought they would break. His arms began to ache, and Walter felt an overwhelming sense of dread, of impending doom. Something was terribly wrong with him.
“Doc … Doc,” Walter coughed in breathless sputters. “I think … I’m … having … heart attack.”
Doc titrated the IV once more. “You are, Walt. A big one. The big one, in fact.”
Walter’s eyes rolled into the back of his head. His heart seemed to bounce freely around his chest. From somewhere in the whiteness and the blackness of this strange place where Walter now found himself, he heard a familiar sound. A melody. Some song. A tune he once loved. Yes, there it was, echoing softly in his mind. The words came to him, as did the angelic glow of Melinda’s face.
You don’t know what you’ve got till it’s gone …
CHAPTER 2
There was no “normal” to Dr. Julie Devereux’s workday. Life as a critical care doc at White Memorial, a five-hundred-bed hospital in the heart of Boston, was suited to people who could roll with it when the emergency department interrupted morning rounds for an immediate consultation, or when a patient who had been stable moments ago was suddenly and inexplicably teetering on the edge of death.
Having Trevor, her twelve-year-old son, tag along for the day was not on Julie’s schedule. But go with the flow, right? In no way did that mean Julie was pleased. If this were some official take-your-kid-to-work day, she would have had a different attitude. But this was a take-your-kid-to-work-because-he-got-suspended-from-school-for-fighting day. Not endearing. Not by a long shot.
Trevor, a lanky, sweet-faced boy with thick, shoulder-length brown hair just like his father’s, brooded behind Julie as she headed for her office down the hall.
“Wish I didn’t have to be here,” Trevor grumbled.
Julie stopped walking, turned around, and gave her son a hard-edged stare. “Well, I’m sorry, Trevor, but people do have to work for a living.”
Two nurses strode past and said a warm hello to Julie. She was beloved here—a lot more than at home, it seemed.
Julie reminded herself to be patient with her son. Change was not easy, and Trevor, her only child, had to adjust to the fact that his mother would soon be remarried. She wondered if this acting out was Trevor’s way of processing a slew of conflicted emotions. He liked Sam, or maybe tolerated was the better word, but resented the idea of a man other than his father living with them. He had said as much to Julie. Maybe the kid held out hope that Julie and Paul would reconcile one day. That was not going to happen.
Perhaps once she and Sam were married and living together, Trevor’s recent string of bad behavior would come to an end.
“I still don’t see why you couldn’t have left me at home like I wanted. I would have been fine on my own. Better than being stuck in your office all day.”
Julie shook her head in frustration. “Getting suspended two days for fighting isn’t exactly how to earn trust,” she said in a matter-of-fact tone.
“Well, he started it,” Trevor shot back.
Julie sighed. Trevor always had an answer for everything.
“How come I can’t just stay with Dad?”
“Because your father isn’t home. Believe me. I called.”
“Where is he?”
“In New Hampshire, collecting scrap metal for his next sculpture.”
Trevor seemed to think this was cool. His dad was cool. Of course he would think that. His dad thought homework was a waste of time and sugared cereal was a four-course meal.
“Dad let me weld the last time I was there.” Trevor made this seem like an off-the-cuff remark when he knew he had tossed a barb that would sting.
“He did what?” Julie arched one of her delicate eyebrows and tried to block all sorts of horrible images from her mind. She had seen enough third-degree burns in her career to have some stern words with her ex-husband before this day was over. Paul had good intentions, but when it came to good judgment, he could be worse than Trevor.
“If it sells, I’m going to get a cut,” Trevor announced with pride.
“Well, before you pick out a new iPad with your earnings, ask your father how many sculptures he’s sold in the last few years.”
Trevor looked away because he knew the answer was zero. Paul was quite talented, and his art fairly inventive, but he was not particularly ambitious or motivated. He did not make much money from his sculptures. Julie accepted that, as long as he paid the court-ordered child support. Paul could do this because of a substantial inheritance from a grandmother, one that allowed him to lead an artist’s life. Paul paid his share of the child support on time and with no grumblings, but still Julie wished he’d be a stronger role model for his son.
Sam Talbot would never replace Paul as a father—nor would he ever try—but with his kindness, maturity, and stability, Sam was sure to be important in Trevor’s life. As a high school history teacher, Sam was not exactly rolling in the dough, but the way he loved her and the way she loved him made Julie feel like the richest woman in the world.
Julie set a hand on Trevor’s delicate shoulder. Her son might have been obstinate, disrespectful at times, a little mouthy, but he was still her pride and joy.
“Look, kiddo, you’re here for the day,” Julie said, “so do your homework and try to make the best of it. And I hope you brought a good book, because you’re not going to be glued to your electronics all day.”
Julie tugged on her white lab coat so it fit better over her beige blouse. Everything fit better since she’d lost the weight gained during the divorce. She told people it was diet and exercise, but really the weight came off after she jettisoned the stress. For that, Julie had motorcycles to thank—a Honda Rebel 250, to be precise, which Sam, an avid rider, had bought for her as an engagement gift. Julie was looking forward to their upcoming ride to the Berkshires, and showing Sam the new hip-hugging leather pants she’d bought online from Cycle Gear. But the weekend was several days away, which meant plenty of time for Julie to work, look after Trevor, and feel like she was shortchanging both.
Since her separation from Paul, Julie had come to know a lot of single, career-oriented mothers who tried to be all and do all. Her advice to them, whenever asked: go ride a motorcycle. The moms might not lose the worry and doubt, she explained, but they’d have a blast forgetting some of their troubles for a while.
Julie’s first patient of the day was Shirley Mitchell, a seventy-seven-year-old woman with a nasty case of pneumonia to go along with the initial stages of peripheral artery disease. Despite her illness, Shirley had a fairly decent quality of life. This could not be said for many of Julie’s critically ill patients in the thirty-three-bed unit, who sometimes endured debilitating and costly treatments in order to squeeze out only a few more months of life.
Julie was an advocate for death with dignity. She wrote papers and frequently spoke at conferences with the goal of bringing about policy change. Self-determination was a fundamental right, and the courts were beginning to agree. It was coming to health care whether the providers liked it or not. High-profile cases like that of Brittany Maynard, the twenty-nine-year-old woman dying of brain cancer who ended her suffering on her own terms, would continue to be a force for change. Death with dignity laws did not, as some critics said, kill people who did not wish to die. Julie could produce thirty years of data as proof.
She, and others who thought like her, wanted to take government out of the equation and let the patient and the patient’s doctor come to a decision on what was bes
t. The option to have an option was what Julie fought for, not some death mandate, as her opponents feared.
Her activism, of course, was controversial among her colleagues who viewed her stance as anathema to their profession. It violates the Hippocratic oath to do no harm. It demeans the value of human life. It will lead to abuse or reduce palliative care options. All valid arguments, but Julie believed that even those most vocal in their opposition had at some point wrestled with doubt while helping to keep alive a supremely sick patient who wished only to die.
Sometimes dead is better.
Shirley’s nurse was Amber, a petite twenty-six-year-old blonde who one day—not quite yet—might turn Trevor’s head. For now, Trevor seemed oblivious to Amber’s beauty and was content to wave hello from the doorway after Julie made introductions.
“Trevor, you know where my office is. Why don’t you go there now and wait. I’ll come get you for lunch.”
Trevor gave a nearly imperceptible head nod, and away he went.
Somehow Amber had managed to turn Shirley onto her side, not a simple feat given this particular patient’s size, and was applying moisturizer to the backside of her body. ICU nurses were some of the most compassionate Julie had ever worked with. They did an incredible amount of work, almost always with a smile regardless of the unpleasantness of the task.
Shirley was not aware of Amber. She was sleeping soundly, thanks to the propofol, and breathing normally through the endotracheal tube inserted down her throat.
“How was her night?” Julie asked. Since this was the morning shift, Julie would get Amber’s take on what the night nurse had relayed.
“I heard it went pretty well,” Amber said in a cheery voice. “Fever is down to a hundred and one. WBC is fifteen thousand.”
“Fifteen thousand for the white blood count,” Julie repeated, sounding pleased. “That’s approaching normal.”
“And there’s less secretion in her endotracheal tube,” Amber added.
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