by Between Life
While striving to make the “right” choices, we need to acknowledge the depth of our own turmoil. Given the stakes, the grief and agony we experience are expected. Recognize the need for gentleness. Create leeway for sorrow. Pray. Reach out. When darkness penetrates our days and impossible decisions suffocate us, fellowship reminds us of our hope in Christ, enfolds us in love, and bolsters us with life-giving courage. “If we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus his Son cleanses us from all sin” (1 John 1:7). Seek support. Reach out to family, to chaplaincy, to your church. Surround yourself with the love of Christ to guard your heart and to spur you on.
Not Our Voice, but Theirs
Surrogate decision making requires that we differentiate our loved ones’ preferences from our own desires. Your role as a healthcare proxy is not to answer what you would do, or even what you want for your loved one. Rather, your task is to discern how he would choose for himself. In other words, your goal is to be the voice of the patient, to answer as he would if he still possessed the power to speak. This process, called “substituted judgment,” requires us to step outside of our own wants, to put aside the strife churning within us, and to contemplate the unique attributes of those for whom we care. It mandates setting aside our yearning to embrace a loved one again and focusing instead on the values and experiences that clarify his approach to the world.
Studies show that we often miss the mark. One systematic review revealed that next-of-kin surrogates accurately predict a patient’s preferences in only one-third of cases.4 Interestingly, in this study advance directives did not improve predictive accuracy. In other words, even when patients had communicated their preferences, surrogates made decisions contrary to their wishes. Communication happened, but something broke down in translation. Such data warn against making decisions hastily, according to our own incentives. As surrogates, our role is to honor our loved ones as unique image bearers of God. With dignity comes the freedom to make choices about care, in stewardship of our God-granted bodies (1 Cor. 6:19–20; Phil. 1:20).
As we discussed in the previous chapter, Christian autonomy intertwines with the gospel. The Bible disallows us to take our own lives or to willingly take that of another. However, how we serve God with our gifts and how we experience suffering are highly individualistic. To love one another as Christ has loved us requires that we view one another as God sees us: cherished, forgiven, wonderfully made, and unique, with no precise equal on earth (see Ps. 139:13–14; John 3:16; Rom. 8:35; Eph. 1:7). Such a view requires that we look past our own desperation for a loved one to remain with us always; examine the special traits that constitute his temperament, personality, and dreams; and accept wherever that inquiry leads us—even if we ourselves deplore the outcome. For the family at the beginning of this chapter, this approach meant acknowledging that their loved one abhorred medicine, prized independence, and would never have consented to the interventions with which we barraged him.
Questions to Ask
Surrogate decision making, while impossibly difficult, permits us to live out the commandment to love our neighbors as ourselves. It requires us to set aside our wants and concerns and to seek after the minds and hearts of those we love. Although the burden threatens to crush us, when we persevere in love and faithfulness to support our loved ones in their last days, we live out the gospel. We embrace a truth that triumphs over death.
When seated at the conference table, if no advance directives exist, a series of questions can help guide us. As we have discussed throughout this book, the first task is to determine whether treatment promises recovery or only prolongation of suffering and death. We return to the questions introduced in chapter 2:
What is the condition that threatens my loved one’s life?
Why is the condition life-threatening?
What is the likelihood for recovery?
How do my loved one’s previous medical conditions influence his or her likelihood for recovery?
Can the available treatments bring about cure?
Will the available treatments worsen suffering, with little chance of benefit?
What are the best and worst expected outcomes?
If these questions point to a high likelihood for recovery, pursuing treatment makes sense. However, if illness has so critically progressed that tubes, medicines, and machines promise suffering without clear hope for recovery, we need not insist upon burdensome measures.
When the futility of treatment is ambiguous—when the prognosis is unclear or recovery possible only with significant disability—our task becomes more opaque. These moments demand that we muster the most strength, patience, and insight, even while our sorrow ill-equips us to wield such virtues. They require us to limp forward, still lame with grief, and to displace mountains.
Our chief goal must be to hear our loved one’s voice. We need to discern which treatments would be too objectionable for a loved one to endure and which he would embrace despite detriment to his comfort, independence, and lifestyle. Again, as this responsibility staggers our mind, a series of questions can guide us:
What matters most to my loved one? What drives him in life?
What comments has he made in the past regarding end-of-life care, if any?
What are his goals, both in the short term and for his life in general?
What is he willing to endure to achieve those goals? What would he be unwilling to face?
How well in the past has my loved one tolerated pain, dependence, disability, and fear?
If he could speak for himself, what would he say about the current situation?
Such inquiry can anchor us when our own pain swallows our thoughts. It can also assist when disagreement arises between family members about the proper course of action. Every ICU physician can relate stories of estranged siblings or children reappearing during the final days and hours before death to object to the plan of care. Such scenarios point to the complexity and messiness of end-of-life discussions; they rarely occur neatly packaged but rather simmer with mottled histories and buried sentiments. The goal, without fail, is to focus on what our loved one would say. These debates should center not on ourselves but on the one whose voice we strive to adopt.
These questions can especially help when we vouch for loved ones who are not believers. Doubts about our beloved’s salvation can further grieve us when we navigate unfamiliar and painful territory, and we worry about how to proceed when an ill family member has never shared our values. The temptation arises in these situations to proceed as we would for ourselves, but such an approach does not embrace the status of our loved ones as unique image bearers of God (Gen. 1:27; Ps. 139:14–16) So long as a loved one’s wishes do not violate God’s law—as no practice within the hospital should—we must honor their thoughts on suffering and medically prolonged death.
The responsibility as surrogate decision makers can seem too arduous to withstand. Yet when we aim to hear our loved one’s voice after it has fallen silent, we honor and love him. In so doing, we also serve God the Father, who gave his Son to secure our loved one a home in heaven.
Grief in the Aftermath
The impact of deciding upon our loved ones’ care can linger for years afterward and strike many of us with depression, complicated grief, anxiety, and guilt.5 The pain from the initial loss can chisel away at our souls long after we have said goodbye. “I think of her every day, and I ask God to forgive me for not protecting her,” one mother confided in me, after losing her daughter. Guilt shatters our concentration and disturbs our dreams. Sorrow weighs us down. Atop this grief, as we consider our loved ones’ struggles before death, we may feel unworthy of our sadness.
When our deceased loved one was not a believer, our uncertainty about his or her salvation can further torment us. While few words can assuage this pain, we find comfort in the narrative of the penitent criminal crucifed beside Jesus (Luke 23:40–43). With his dying breath, this sinner confesse
d faith in Jesus and secured a position alongside him in Paradise. While we cannot know the full depth and complexity of our loved one’s heart and thoughts, we can be assured of God’s grace, his mercy, and his goodness (Gen. 18:14, 25; Ex. 34:6). We cannot know our loved one’s fate, but we cling to the Lord’s abundant mercy.
God knows our pain. He draws near to us as we cry out in anguish (Ps. 34:18). We need not run from our sorrow or fear weeping. From a biblical standpoint, the only initial response to sadness—to the broken matters of a world wrenched from God’s perfection—is lamentation.
In the garden of Gethsemane, as he anticipated the cross, Jesus was “very sorrowful, even to death,” and “being in agony he prayed more earnestly; and his sweat became like great drops of blood falling down to the ground” (Matt. 26:38; Luke 22:44). Jesus also wept when Lazarus died. He knew the Father would empower him to reanimate Lazarus from death. He had absolute assurance in the Father’s authority and goodness. Yet when faced with the death of a friend, he wept, prompting onlookers to remark, “See how he loved him!” (John 11:33–36).
That Christ himself wept illuminates the importance of grief. Christ wept out of love. When we open ourselves to the outcries of our heart, we proclaim that which we mourn as precious. We declare that there exist things in this world of great worth, of meaning, of value that exceed any glimmering stone dug from the earth. We praise God both through treasuring his workmanship and lamenting its loss.
Still, when grief descends, we can grapple with strangling loneliness. When the shadows wrap you in their cold limbs, I encourage you to seek out fellowship with those who have traveled the same road. A number of Christian bereavement services aim to support those of us suffering through the aftermath of loss. The Further Reading section includes a list of such resources, in particular GriefShare, a Christian recovery support group geared toward healing.
Amidst our grief, we rest in the assurance that “the one who endures to the end will be saved,” and that when Christ returns, “he will wipe away every tear” (Matt. 10:22; Rev. 21:4). Yet in the meantime, while still locked in a fallen world, we “weep with those who weep” (Rom. 12:15). We lament, and thirst for God.
Take-Home Points
Most people cannot speak for themselves at the end of life. Often, decisions about care fall to loved ones.
Surrogate decision making requires us to consider how our loved one would answer. A loved one’s wishes may differ from our own, and our challenge is to embrace his or her unique attributes and preferences rather than chase after our own desires.
A series of questions can guide us in differentiating life-prolonging from death-prolonging treatment. Additionally, inquiry can help us decipher what might constitute undue suffering for a loved one, and what he or she might be willing to endure to preserve what matters in life.
Complicated grief, guilt, anxiety, and depression afflict surrogate decision makers in the aftermath of a loved one’s passing. We are compelled neither to suffer alone nor to swallow our sorrow. Seek support from friends and believers enduring the same tribulations.
Conclusion
I trained in critical care out of passion for the success stories. Remembrances of the trauma victims who survived car crashes, the mothers with life-threatening sepsis whom we returned home to their children, and the gallant rescues of fathers with ruptured aortic aneurysms have inspired me and sped me on. This book does not capture such stories, but they provide ample and vivid evidence that when used well, critical care represents an instrument of God’s mercy, a vehicle for his compassion.
Yet, as I hope the preceding pages have illustrated, tragedies arise when we foist these same dramatic measures upon the dying. The ICU, for all its healing potential, blurs the boundary between the heroic and the inhumane. Brittle bodies do not mend easily. When we tackle the enfeebled and the fragile with aggressive measures, we shatter that which we seek to protect. Among the terminally ill, ICU technology can actually shorten life and steal from us precious time necessary for spiritual preparation.
Modern medicine’s perversion of the dying process became apparent to me thousands of miles from the ICU in which I worked. During a medical mission to Kenya, a gentleman shuffled through the schoolroom door where I sat with half a dozen other clinicians in our makeshift clinic. The cool of the early morning had burned away, and I habitually wiped sweat and red dust from my skin as I tugged off my white coat. The hours spent piecing together medical histories in clumsily translated Swahili had drained me.
He eased himself into a plastic chair. He clutched a cane for refinery, not for infirmity, and cordially removed his tattered hat when he introduced himself. Worry creased his brow.
“I was wondering if you could please help me,” he said. “I had an operation for hemorrhoids some time ago, but it’s not fixed anything. I am constantly bleeding. Every time I go back, they just give me tablets, but they don’t help. I wish to know what I have. Even if it is something that cannot be cured, I just wish to know.”
He dropped a dilapidated booklet of hospital records onto my table. I leafed through the stained pages and froze upon a word scrawled in pencil. My heart sank. He did not have hemorrhoids. He had rectal cancer. He also could not afford the operation that might save his life.
I searched his eyes, and a verse surfaced: “Your faith has made you well” (Matt. 9:22). I choked back tears, leaned forward, and held his hand. We discussed his diagnosis for the next half hour. I drew diagrams. We prayed together.
After we spoke, he paused for a long while, deep in thought. I watched a complex parade of emotions silently dance over and then flicker away from his face. “Thank you for explaining to me,” he finally said. The creases had smoothed from his forehead. While his gaze was plaintive, I saw no distress in his eyes, but only a quiet remorse. “I see you have sympathy and compassion for me, and I am grateful. I am in the Lord’s hands now. I must trust in him. He will provide what is best for me.”
This gentleman lived in a remote Kenyan village, hours away from any hospital. The pastor with whom we served told us stories of people carrying loved ones on mats for miles to receive medical attention, only to have them die in the road. That such disparities in medical care exist, and that they victimize the poor, exemplifies how sin still thrives while we await the return of our Savior. We contemplate them, and we cannot help but fall to our knees, gasping for breath.
My patient had no choices for further care. The trappings of intensive care were foreign and remote, not even options for him. And yet the clarity of his path—however dismaying it was—permitted him to focus on what really mattered. With his fate apparent, he turned in fullness of heart and faith to God.
Intensive-care technology rarely allows us such reflection. In the best scenario, we focus on the next procedure, the numbers, and the technicalities, with little reserve left to contemplate our faith. In the worst case, the technology upon which we rely so heavily hijacks our freedom to worship. It bars us from communion, fellowship, contemplation, and even prayer.
When we forfeit focus on God and his Word to chase after machines, we ignore God’s grace. We worship creation rather than its maker. We discount the saving grace of the gospel and the brilliant hope of the resurrection in favor of man-made technology, forged by imperfect hands.
Yet as our grief, our fear, and our affliction surge forward to overtake us at the end of life, they still cannot threaten our hope. In all things, the cross transforms our worth, our fate, and our view of the end. We serve a God who so loves us that he gave us his Son to wipe clean our sins (John 3:16). Even when the threat of death enshrouds us, we rest in the assurance that Christ has defeated death and that “for those who love God all things work together for good, for those who are called according to his purpose” (Rom. 8:28). Even in our sufferings, we serve Christ (Rom. 5:3–5).
The last breath to slip from our bodies signals the end to our earthly lives but not the end of our walk with God. For the believer who
knows and loves Christ, death loses its sting (1 Cor. 15:55) and ushers us into communion with the One who has known us since before the womb (Ps. 139:13). When Christ returns, no sickness or death will blot the new heavens and the new earth (Rev. 21:4). Our brokenness in both body and soul will heal. Our fractures will mend. Our fears will vanish. And the love of our Lord Jesus, in its blinding brilliance, will wash us in light for all eternity.
In the meantime, while we struggle with turmoil in these days, on this earth with its crumbling edifices, let us lean into our faith (Prov. 3:5–6). Let us embrace one another. Let us care for one another in truth and love. And while ventilators sigh and alarms blare, let us find our ultimate solace in the truth: “My flesh and my heart may fail, but God is the strength of my heart and my portion forever” (Ps. 73:26).
Acknowledgments
Although its impression has lingered upon my heart for years, I never set out to write a book. The endeavor unfolded gradually, out of God’s grace, and through the generous encouragement of mentors, friends, and a few remarkable colleagues who offered me their time and counsel despite never having met me before. The attention poured into this book is a testament to the love and generosity so central to the body of Christ.
I thank Tony Reinke and the staff at Desiring God for their encouragement with this idea, for their patience with and support of an unknown writer, and for guiding this project from its inception as an article series to the book it has become. To Pastor Jefrey Jensen at Our Savior Lutheran Church, and Dr. Bob Weise at Concordia Seminary, thank you for your keen eye and attentive feedback as I navigated the theology. I am indebted to Dr. Robert Orr for his conversations with regard to ethics and to my agent Erik Wolgemuth for his support and helpful feedback on the flow of words. I thank Dr. Justin Taylor and staff at Crossway for this opportunity, for their insight, and for their invaluable blend of professionalism and affability. A special thanks, especially, to Lydia Brownback, for her care and skill in editing this work. To my readership, so many of whom have applauded this effort, despite never having met me, I thank you heartily. To my small group and family from Our Savior, your prayers have sped me on. To my husband, Scottie, sincere thanks for tolerating my keyboard tapping at five every morning, for your steadfastness, and for the compass you are to me. To my patients over the years, thank you for the privilege to partner with you, and may God bless you. And above all, thanks be to God. May all the earth praise his name.
