by Between Life
I have changed identifying details, including gender and diagnosis, to protect the privacy of the patients and families who inspired this book. Additionally, in some places I have combined narratives into composite accounts to more effectively highlight key issues. Throughout, however, I have endeavored to preserve the rawness of the struggle that patients and families face as they navigate end-of-life dilemmas. In particular, the conversations are accurate, taken in many cases from my own notes over the years of encounters I dared not forget.
My hope is that through this book, Christian believers grappling with decisions about life-prolonging measures can confront their situation with peace and discernment. Although clergy and healthcare professionals will find Between Life and Death useful, I wrote it for patients and their loved ones as they face the unthinkable. If you are facing terminal illness or discussing end-of-life wishes with a physician, I recommend reading this book in its entirety. On the other hand, if the tempest of critical illness pressures you into urgent decision making, with little time to read and digest, I suggest reading the chapters “Framing the Issue” and “Wisdom Begins with the Word,” and then referencing the sections pertaining to your specific situation. “Advance Care Planning” and “Being a Voice” will offer guidance in making decisions for yourself or your loved ones. Key points at the end of each chapter provide quick reference, and relevant resources, including a sample advance directive and suggested reading, appear in the appendices. Throughout, I have endeavored to write in plain language; however, I have included medical terminology in parentheses throughout the book, and definitions of these terms appear in the glossary.
I have no intention of dictating how to proceed clinically in every case. Any medical decisions should occur on an individual basis, in collaboration with a trusted doctor and with your unique attributes, values, and circumstances central to the discussion. Rather, I seek to inform, to decode the jargon, and to provide a biblical framework for key issues you may encounter in an ICU setting. I hope to provide clarity and solace to the son at the bedside, the grandmother weighing her options, and the patient whose life flickers and wanes before the life to come.
I never trained at a seminary. I write as a follower of Christ and a specialist in critical care who, after becoming a believer during her ICU training, found herself counseling patients and families through heart-wrenching dilemmas on a near-daily basis, and who found dialogue about medical choices in the context of Christian values glaringly absent. Mentors among pastors and ethicists kindly guided me in the writing of this book, and I am sincerely grateful for their insights.
As we delve into a shadowy realm, I pray for those of you struggling with the heart-wrenching dilemmas touched upon in these pages. I pray that whatever the outcome, the Lord may grant you strength and peace, even in the grim hours when life dwindles. In end-of-life care, the best answers are not about right or wrong but about God’s grace, manifest in Christ (John 3:16). May we rest in the assurance that however total our heartbreak, and however devastating the path before us, God has triumphed over sin, his love for us surpasses understanding, and this broken world is not the end. As Paul writes, “Neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord” (Rom. 8:38–39).
Part 1
Dying, but Alive in Christ
1
Framing the Issue
She reminded me of a sparrow buffeted by wind. Her diminutive frame trembled, and a nurse placed a hand on her back to steady her as she teetered beside her husband’s bed.
Her husband watched through glazed eyes. His chest rose and fell with a sickly cadence, like that of a maimed bird beating its wings to take flight. He seemed remote, his mind wandering through forgotten country. He had developed pneumonia after a difficult surgery, and as infection clogged his lungs, delirium seized him. His bleary gaze searched a space none of us could see.
“He doesn’t want it!” his wife insisted.
The surgeon drew nearer to her. “I don’t think you understand me. He’s already gotten through the surgery. He’s made it this far. I think he would want the breathing tube.”
“No, doctor, he wouldn’t,” she retorted, her voice cracking. “We talked about this so many times, and he was crystal clear. He’s always said, ‘When God calls me home, let me go.’”
The surgeon folded his arms. “But how can you be so sure that God is calling him home right now? You realize he’ll die without the tube, right?”
Her face reddened. She opened her mouth to speak, but for several moments words failed her. Veins swelled in her neck. “No tube!” she finally managed.
The nurse’s eyes met mine, and she pleaded with me to intervene. I urged the surgeon to allow me to speak with the patient’s wife in private.
“Please, help her to understand,” he urged me as he left the room. He shook his head as he walked toward the ICU double doors.
I sat beside my patient’s wife and cupped one of her hands in my own. With her free hand, she clutched her husband’s fingers. In contrast with her broken spirit, her grasp seemed forged from iron.
“Please,” I ventured, “can you tell me about your husband? What is he like?”
A thin smile graced her face, and her demeanor softened. She described for me their sixty-year marriage, the partnership they shared, the tenderness, the trust. She outlined his declining health over the last year and his inability to engage in the things that set his mind and heart afire. Pain, immobility, and shortness of breath confined him to the house. Visits with friends, once life giving, now exhausted him. The fog of pain and medication so clouded his thinking that he could no longer concentrate long enough to read, not even to skim the Bible that sat on his bedside and which for decades had steered him through tempests. His own father had suffered a slow, painful death in the ICU, and he had pleaded with her to shield him from the interventions he witnessed. The very idea of a ventilator horrified him.
“He didn’t even want this surgery,” she related to me. “I persuaded him to go through with it because I wasn’t ready to give up time with him. On the way to the hospital, he made me promise I’d say no to tubes or CPR or anything like that. He couldn’t stand the thought of it. He’s always said, ‘Let me go home to God.’” Her voice cracked again. “He’s going through all this out of love for me. The breathing machine would be too much.”
I squeezed her hand. “I think he’s made the decision for us.”
Afterward, we reinstated the do-not-intubate order that he had established prior to surgery.1 His breathing would fail without a ventilator, but to force him onto one against his wishes, when its efficacy was dubious and his suffering certain, lacked all semblance of compassion. We changed our focus from cure to comfort. His surgeon, although disappointed, understood.
His nurse remained at his side around the clock to provide medication to alleviate pain and anxiety. When I left the ICU that evening, his wife rested beside him with her head in his lap. Although his gaze remained distant, he stroked her arm with his hand.
The following morning, I again found his wife in tears. Overnight their son had rushed to the hospital in a rage over the decision against a breathing tube.
“You’re not going to kill my father!” he had bellowed at the staff. “I know my dad. He was a God-fearing man who until six months ago went to church every single Sunday. He would not be okay with this.” He threatened to call the police before he stormed out.
When I entered, I found the patient’s wife crumpled and broken at her husband’s bedside, his hand still clasped in her own.
“Doctor, I don’t want to upset anyone,” she said. “Maybe I’m not supposed to argue about this, and just do what everyone else says. But I promised him. I know he wants to go when God calls him. He trusts in God, not in all these machines. What else am I supposed to do?”
As dramatic as it may appear, the turmoil this family endured occurs commonly in our era of intensive-care medicine. Next of kin find themselves in the unfathomable position of advocating for their loved ones in a foreign environment, complete with an undecipherable vocabulary. Among themselves, families bicker and disagree. Nurses fight tears as their patients grimace with yet another turn, yet another dressing change, yet another needle stick. At the center, heavy within the room but often unspoken, is the question of how faith informs the heart-wrenching, convoluted process. Openly, healthcare practitioners, patients, and families debate about prognosis, percentages, and advance directives. Inwardly, we all cry, How long, O Lord? (Ps. 13:1)
The tumult seems incongruous with our vision of life’s end. For centuries, Western culture has conversed about death in euphemisms and poetry. We all long to “go gentle into that good night,”2 and “to die, to sleep.3” We soften the vulgarity of death with the phrase “pass away,” as if life were a gauzy breeze, a zephyr that pirouettes in the air before vanishing into silence. Literature, philosophy, politics, and next-door neighbors depict death as a subdued stepping over a threshold, replete with quiet resignation, as subtle as a passing whisper.
Even while we cling to such metaphors, the landscape has shifted beneath us. In 1908, 86 percent of people in the United States spent their final days at home, among family and cherished friends, in the spaces that forged their memories.4 The particulars of dying reflected its spiritual reality as a passage from captivity to sin to renewal in Christ. It was profoundly personal and relational.
A century later, Americans still treasure this understanding of death and cite the home as its rightful domain. Over 70 percent of us in the United States wish to spend our final days as our predecessors did—at home, among those we love.5 Yet in our era, only 20 percent do.6 Death has passed from the purview of families, pastors, and the quiet of home to sterile rooms that resound with alarms. The majority of us now die in institutions, facilities that run the gamut from nursing homes to acute-care centers. Up to 25 percent of people over the age of sixty-five years spend their final days in an ICU, far removed from adored friends and glimmers of the past.7
Medical progress over the last fifty years has equipped doctors with technologies that, under the right circumstances, can save lives but also transmute death from a finite event into a prolonged and painful process. Death now commonly occurs in fits and starts, in a slow, confusing fragmentation of a life. It occurs within institutions, among medical personnel, distant from the view of families and the consolation of home. When technology so degrades a natural event into a complicated ordeal, our comprehension falters. Poetic constructs, while they appeal to our hearts, break down when death involves a mechanical ventilator, chest compressions, and feeding tubes. Even as Christians, we strive to understand how the numbers and equipment reconcile with the truth that “my flesh and my heart may fail, but God is the strength of my heart and my portion forever” (Ps. 73:26). God’s perfect timing seems less distinct when machinery blurs the boundaries of life and death. His will may seem elusive to us when decisions about ventilators and resuscitation confront us with check boxes. We embrace an understanding of death rooted in hope—in the gospel—that does not align with the distressing decisions that subsume our final moments.
An Unsettling Silence
The transition of death from the home to the hospital hides the realities of dying from an entire culture. As time passes, those of us who know death before it strikes us personally shrink in number. Our fear of dying, already inherent, deepens when it lurks beneath the unfamiliar. Even physicians admit to avoiding discussions about end-of-life care with their patients, out of concern for inciting emotional distress.8 The topic unsettles, and so few of us openly discuss our final days. We prefer to displace the issue from our minds until the need arises.
Unfortunately, most of us will be unable to articulate our wishes when the time comes, let alone prayerfully consider God’s will. Severe illness frequently alters consciousness, creating delirium and encephalopathy that render us disoriented, paranoid, and even hallucinating. The silicone tube required for support on a mechanical ventilator obstructs the vocal cords, eliminating the ability to speak. To tolerate a tube within the airway, we require sedating medication, which inhibits even nonverbal communication. In addition to enshrouding sufferers in confusion, critical care deprives us of a voice.
When trepidation disallows us to discuss our mortality ahead of time, we strand those we love with impossible decisions. In a recent national survey, only 26.3 percent of adult respondents had completed an advance directive, i.e., a document to guide treatment preferences when we cannot speak for ourselves.9 When doctors cannot communicate directly with us, and we have no advance directive to guide them, they will seek out our healthcare proxy or next of kin for management decisions. Yet many family members and friends feel ill-equipped for this role. The same fears that prevent us from talking openly about death obscure our wishes from those who eventually make hard choices for us.
Even when we complete an advance directive, such documents often oversimplify the realities of end-of-life care.10 Standard forms reduce complex and highly nuanced issues to a series of check boxes. They require us to project our thoughts into the future concerning subjects about which we have little knowledge, and to pass judgments using a polarizing metric without middle ground. We declare on such forms that either we will accept a mechanical ventilator, or we will not. We indicate we will accept chest compressions, or we will not. Such a stark, concrete approach disregards the messy realities of intensive care, a field that abounds with caveats. If you have declared “no ventilator” on an advance directive form, would you refuse such an intervention for a completely reversible event? What if you require a ventilator for only twenty-four hours? What if support lasts two weeks, but afterward you can recover and return home? A check box can scarcely delineate such subtleties. The efficacy of an advance directive hinges upon the conversation with your physician during its completion and explicit documentation of your values, not upon the form itself.
The Value of Discernment
When we have not communicated our wishes about life-sustaining measures, family members have little to guide them. From the doorway of a hospital room, a patient who will recover may appear identical to one fighting for his life. In both scenarios, we may require a mechanical ventilator to breathe, and sedating medications may plunge us into unconsciousness. An array of poles with intravenous (IV) bags and pumps will surround us. Wires from monitors may coil from our chest and scalp. For the aggrieved spouse at the bedside, such foreign trappings render looming death indistinguishable from steady recovery.
Differentiating between life-threatening illness and self-limited conditions that require only transient support involves an educated interpretation of numbers: the ventilator settings, medication dosages, laboratory values, radiography studies, and vital signs. The specific disease processes at work, and their treatability, are paramount. Understanding requires, at minimum, a detailed discussion with a physician who is adept at translating the numbers and statistics into laymen’s terms and can frame the situation into a picture that families can comprehend.
Unfortunately, experience communicating with clinicians can vary. Physicians without a background in palliative care report discomfort in discussing end-of-life issues and cite concerns over unclear prognosis, time constraints, patient emotional distress, and inadequate training as factors inhibiting such encounters. In acute scenarios, we must place immediate trust in a physician with whom we have no prior bond. Studies show that during such situations, doctors are more likely to pursue aggressive treatments that may not align with our wishes.11 One in ten Medicare decedents have surgery during their last week of life, despite the fact that only 10 percent wish to spend their last days in the hospital.12
When unfamiliar medical details muddy understanding, we need to lean a
rdently upon our assurance in Christ. Yet in one study of the dynamics between physicians and the loved ones of dying patients, only 20 percent of discussions touched upon spirituality, despite the fact that 77.6 percent of surrogate decision makers reported faith as important to them.13 In this same study, loved ones raised the topic of spirituality in the majority of cases, and in only 20 percent of these instances did physicians inquire further. Surveys with physicians and nurses suggest that although most value the spiritual needs of their patients at the end of life, few feel comfortable engaging in conversations about faith.14 Healthcare practitioners report inadequate preparation for spiritual dialogues and suggest that such conversations fall outside their scope of practice.15
Thus, despite their currency in the most fundamental of spiritual issues—life and death—modern medical systems offer scant context for a faithful response. Meanwhile, faith directly informs the care we pursue. Research shows that those of us who report significant support from a religious community are less likely to receive hospice services, more likely to pursue aggressive interventions at the end of life, and more likely to die in the ICU.16 The confusion—and anguish—of end-of-life care deepens when we divorce the technicalities of dying from its spiritual origins.
In the case scenario at the start of this chapter, Christian faith informed the perspectives of my patient’s wife and son, yet they arrived at diametrically opposed conclusions. According to his wife, aggressive measures repulsed my patient because he wholeheartedly accepted God’s authority over his life and death, and he saw his worsening physical and cognitive impairments as hindrances to a life of faith. His son, however, reasoned that his devotion to God would compel him to pursue every intervention possible to extend his life.
