by Between Life
We met with her family multiple times over the course of her ICU stay, and they voiced concerns that she might not consent to ongoing treatments if she could speak for herself. Nurses further noticed her discouragement and predicted she might request comfort measures if asked.
When we sat down with her during a period of lucidity, she surprised us all. In a voice we could barely hear, and with a tremulous finger upraised, she identified the thing most important to her: the ability to watch television with her family. She wished to press on, through the staggering setbacks, the mounting infections, and the days that slogged interminably, if such measures graced her with a few good stories and a familiar pat on the arm. Commonplace companionship was more precious to her than the independence and comforts her treatments had long ago abolished. She guided us to continue aggressive care in the weeks that followed, past points that others would have expected. Eventually, she regained enough stability to transfer to a rehabilitation center, where she continued to watch TV shows with her family at her side.
On Autonomy
As we discussed in the previous chapter, protection of individual self-determination is a driving force in medical ethics. As image bearers of God, we indeed possess inherent dignity and free will. Our capacities to create and to innovate reflect God’s goodness, with our choices for righteousness shimmering ripple-like through the expanse of human history. Yet, as Christians, we know that God grants us freedom not for self-aggrandizement but for his glory. Our worth stems from Christ, not from our rugged individualism. When we cling to our autonomy at the expense of all other principles, we slink toward idolatrous self-reliance. The question “What would I want?” does not encompass all our concerns as we consider end-of-life care. Rather, as we remember God’s work, his weaving and refining of our steps as we journey toward heaven, we must ask ourselves, “How can I continue to faithfully serve God?”
As we consider our walk in faith at the end of life, we must remember that endotracheal tubes, sedation, and critical illness strip us of speech and alertness. While a ventilator breathes for us and medications fog our mind, we can neither pray nor confess nor seek out life-giving fellowship with others. If these measures promise to return us home, where we may live out our faith, the discomforts and dependence may be worthwhile. On the other hand, if we pursue such interventions in the face of futility, technology can eliminate our abilities to pray and reflect in the moments when we most need to lean upon God.
On Suffering
Suffering does not conform to a universal mold. Our experience of suffering and our steadiness as we pilot its swells depend upon the unique circumstances, temperaments, and histories that shape us. Our lives evolve in patchwork, with each fragment, each memory, either reinforcing our forbearance or fraying against the wind.
As with my patient who was content to endure pain and disability if she could watch television with family, some of us have a high threshold for discomfort and harvest deep joy from simplicity. For others who smolder within the crucible of suffering, even marginal deficiencies in independence may shatter the soul. As we outline our wishes for the end of life, we must be honest: what can we endure, and what would irrevocably drown us in despair?
Scripture teaches us that hardship riddles the path of the believer (Mark 13:13; Luke 14:27; John 16:33; Rom. 8:18; 2 Tim. 3:12; 1 Pet. 4:12–19) but also that God engages with suffering to enact good (Gen. 50:20; John 9:1–3; Rom. 8:28). Even while we toil through the gloom, God sees us, knows us, loves us, and draws us closer to him. “The Lord is near to the brokenhearted,” writes the psalmist, “and saves the crushed in spirit” (Ps. 34:18). Also, from Romans 5:3–5:
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.
Some suffering can refine us and deepen our faith. And yet we serve a God who abounds in love and mercy (Ex. 34:6; Pss. 86:5; 103:8). He knows each of us individually and loves us as a father cherishes his children (Pss. 46:1; 94:18–19; 147:3; Isa. 41:10; 43:1–3; Jer. 1:5). While God may engage with suffering to strengthen, discipline, and instruct us, in his mercy he does not condemn us to wallow in unbearable pain without purpose. As a father would not so torment his children, so God does not delight in our crushing (Lam. 3:31–33; Ezek. 33:11). He does not require us to pursue medical treatments that would ravage us.
Through it all, the saving grace of Christ Jesus offers us a living hope to sustain us (1 Pet. 1:3; Rev. 21:4). Whatever trials we bear, we cling to the assurance of our salvation in him.
Wisdom Begins with the Word
As we consider our advance directives, we must return to the biblical principles outlined in the first chapter. Gospel-centered end-of-life care requires consideration of the following precepts.
1. Mortal life is sacred. Our lives are a gift from God. We are made in the image of God, and each one of us has inherent dignity and value. We are to cherish and protect the life God gives us.
2. God has authority over life and death. This side of the fall, death escapes no one. It claims us all. While we should strive against death when there is hope of cure, to fight when such efforts are futile discounts God’s steadfast love and his ability to effect good even as our lives end. To deny our mortality is to ignore the saving grace of the gospel.
3. We are called to love one another. God desires for us to be merciful and compassionate. He calls us to care for the ill and to alleviate suffering. We should not compel people to doggedly chase after treatments that inflict agony. Likewise, we need not accept such interventions ourselves, if suffering overwhelms us.
4. As followers of Christ, we need not fear death! Even as our lives draw to a close, we cherish the promise of new life. We rest assured in Christ’s sacrifice for us and in the awe-inspiring depth of God’s love. Our transition into death is transient and fleeting, a momentary beating of wings. Through Christ’s resurrection, we find the promise of restoration, of new life in communion at last with our everlasting God.
As we have explored throughout this book, these principles guide us to: (1) seek aggressive treatments when they offer hope of recovery but (2) decline them when they only prolong death, or when they inflict suffering without commensurate benefit. Including such language in our advance directives can help to guide caregivers when critical illness strikes us.
Guiding Questions
Although advance directives often distill medical decisions into yes/no responses, a vast middle ground spans the extremes of recovery and death. Too often, medical treatment offers not complete recovery but life with new infirmity. For example, you may survive a disastrous battle with sepsis in the ICU but spend months in rehabilitation centers, unable to walk independently or feed yourself. You may suppress leukemia with chemotherapy, but it so shatters your immune system that you spend your extra days in the hospital fighting infections. Or you may undergo life-saving intestinal surgery but not return home for a year due to a long procession of complications.
As we consider our goals of care in such circumstances, the path forward hinges on the questions of suffering upon which we have touched. How much disability are we able to bear? What would crush us? Above all, through the pain and discouragement, how do we continue to serve God? How do we understand the gospel, even as we suffer? With these concerns in mind, a few additional prompts can guide us.
1. What are my goals for the end of life?
This question pertains to how you wish to spend your final days, in light of your walk in the Spirit. Is it important to remain at home? What matters to you as your life ends? Who matters? What activities invigorate you and fasten your gaze heavenward? What places and people are most precious to you? When you envision the end of your life, what details do you most prize?
2. How can I continue to serve God at the end of life?
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sp; Think back to the moments in your life when you have reveled in the joy of the Lord. When have you felt him nearest? Consider the times you have praised him, thanked him, or endeavored to serve him. What did you require in those moments? What will you still require for faithful service as illness closes upon you?
3. How much suffering is too much?
As you envision periods of pain and dependence, what would constitute undue suffering? What outcomes are unacceptable to you, no matter the gain? What would so burden you as to strip away your ability to serve God with joy? What would be intolerable?
4. What trials am I willing to endure to achieve my goals at the end of life?
What are you comfortable sacrificing, and what sacrifice would be unacceptable? As an example, if you aim to spend your final days at home with family, would you be willing to have a ventilator at home to enable this? Would you endure medical treatments that impair consciousness to extend life, or must you be in command of your mental faculties, even if declining treatment quickens the end? Consider the interventions outlined throughout the book and strive to envision what you would be willing to endure to meet your goals at the end of life.
* * *
Statements that summarize the questions above can guide loved ones when a clinical situation falls outside the parameters of checkboxes. To illustrate this, I have included my living will in Appendix 2. I provide this only as an example; your advance directives should reflect your own responses to the questions above, after prayerful consideration.
To clearly outline my directives, I considered biblical principles and then answered the four questions above as follows:
1. What are my goals at the end of life?
My goals are to spend my final days of life at home, communing with family and friends. I yearn for as much time as possible in the quiet of our wooded backyard, where I spent so many evenings casting my thoughts into the twilight, and where I taught my children how to read, count, and relish adventure. God-willing, I wish to be lucid enough to spend time in prayer, reading, and reflection before my passing. I yearn for life-giving fellowship with loved ones and with other believers. I long to glorify God through the written word. Reading and writing are nourishment and air for me.
2. How can I continue to serve God at the end of life?
Through his graciousness, God has demonstrated for me time and again how we most serve him when we love one another. As long as I possess my mental faculties and power to communicate, I believe I can honor him. The powers of speech and writing—and my ability to comprehend each of these—have been vital to my walk in Christ. To serve God, I need to think, to reason, to pray, and to exchange ideas in fellowship with others.
3. How much suffering is too much?
Any debilitating, terminal illness that would permanently impair my ability to communicate is abhorrent to me. When I say “communicate,” I refer not to gestures but to the lively exchange of ideas. I would not accept organ-supporting measures or artificially administered nutrition in the event of persistent coma, vegetative state, or minimally conscious state. Should I suffer from advanced dementia such that I can no longer vouch for myself, I wish for continued loving care and feeding by hand but no aggressive measures. In particular, I would decline CPR, mechanical ventilation, artificially administered nutrition, or dialysis in this setting.
4. What trials am I willing to endure to achieve my goals at the end of life?
I would be willing to accept organ-supporting technology for the above conditions if physicians held out a significant chance of improvement, such that I might regain my ability to communicate. I would be willing to endure prolonged ventilator dependence, paralysis, dependence upon others for activities of daily living, and other debilitating conditions presuming that treatments promised to restore my abilities to reason, to exchange ideas, and to engage in fellowship with others. Communication and thought are key to my walk in faith.
* * *
These responses formed the basis of the living will that appears in the appendix. Your advance directives may diverge markedly from mine and should reflect your unique medical situation, life story, and relationship with God.
I would encourage all drafting an advance directive to talk openly with physicians and to readily ask questions. Frequent and candid dialogue with a pastor can also be life-giving during such heavy deliberations. Finally, as I have emphasized throughout this chapter, in advance care planning the documents help but they comprise only one component of a profoundly important process. Conversations and open communication with loved ones, especially those who may have to make decisions for us, guard against anguish as we set our eyes upon Jesus.
Take-Home Points
Advance care planning refers to the process of outlining our wishes for end-of-life care and communicating these preferences with our doctors and family.
Advance directives are legal documents that record our preferences. Forms include a healthcare proxy to designate a surrogate decision maker, physician orders for life-sustaining treatment, and living wills.
All advance directive documents intend to provide guidance to our family and caregivers in the moments when critical illness impairs our ability to make decisions. Studies show that advance care planning alleviates anxiety and stress among loved ones and protects against unwanted treatments and hospitalizations.
The most important feature of advance care planning involves no form but rather revolves around the process. Deliberating our wishes for end-of-life care and communicating these with our family are paramount.
As Christians, our consideration of end-of-life care should focus on faithful service to God.
13
Being a Voice
Surrogate Decision Making
Throughout this book, I have addressed questions of end-of-life care with loved ones in mind, because in the arena of aggressive ICU technology, the burden of decision making so frequently falls upon families. Many of us will find ourselves in a conference room against our wishes, wringing our hands, wondering what to do for someone whom we cannot fathom losing. Sadly, many of us will be compelled to make crushing decisions while grief drowns us.
At the Bedside
“He would never have wanted this.”
With one hand she wiped tears from her eyes, and with the other she gripped her father’s mottled fingers. She glanced at her mother and brother, both brooding in the room with her, then returned to brush hair from her father’s forehead. His gaunt face, the eyes half open and vacant, contrasted with collages of photographs on the walls that depicted him golfing, or laughing as he clutched a tow-headed grandchild to his chest. In one picture he stood with a robust arm around his wife and beamed as she nestled into him.
“Mom,” his daughter said, turning to that same wife, who in grief had also become a dwindling shadow of the person in the pictures. “You know he wouldn’t want any of this.” She motioned to the array of machinery keeping him alive: the ventilator hissing and sighing. The dialysis machine hulking at the foot of the bed. The catheters snaking into his wrist and his neck, with puncture sites oozing blood in rivulets.
“I know, Baby,” his wife replied, her words barely audible.
“He wouldn’t want any of this if it wouldn’t bring him home,” his daughter said. “He wouldn’t want to needlessly suffer.”
His wife never lifted her eyes but nodded vigorously. “I know.”
“So, isn’t it time we just let him go?” Their eyes met, and they exchanged a knowing gaze. “When his nurse comes back, let’s ask to talk to the doctors.”
Suddenly the patient’s son, who until then had listened wordlessly in a chair with his arms crossed, raised his hand: “Knock it off, please. I’m not okay with this talk. Any of it.”
“What do you mean?” his mother asked.
“What do I mean? You’re talking about killing Dad.”
“We’re not talking about killing him,” his sister shot back. “What a horrible thing to say! We�
�re talking about the fact that Dad never wanted any of this. He’s suffered a horrible stroke and now needs machines just to survive. The neurologists say he won’t get better. He told us never to let him live like this. When do we say enough is enough?”
“Dad wouldn’t give up on any of us,” he insisted.
“Please,” his mother pleaded, “He’s suffered so much. Don’t make him go through more. He doesn’t want any of this. He told us. You know that.”
“So we just give up on him? Is that what he would do for us?”
“He’s dying!”
“That’s for God to decide, Ma. Not us.”
He bolted from his chair and stormed from the room, and his mother buried her face in her hands.
Asking the Impossible
My patient’s sudden illness forced a reality upon his family that they were unprepared to face. A storm of emotions buffeted them, the subtleties of which no single meeting with a stranger could ever unearth. It thrust them into a nightmare, and they thrashed for escape, as anyone would. Grief requires time. It needs to breathe, to flow out in slow tides that heal in their wake. Yet critical illness rarely affords such space.
In one study of people over sixty, 70 percent had no capacity to make decisions for themselves at the end of life.1 Other research echoes these findings, showing that surrogates make care decisions for people at the end of life in up to 75 percent of cases.2
A Burden upon the Heart
Making end-of-life decisions for loved ones takes a heavy toll on the heart, crippling many with guilt and doubt for years afterward.3 Advance directives can assuage guilt, but when end-of-life care remains a taboo subject within a family, the risks of our silence include the brutality of unwanted treatment and the imprisonment of regret. Even when God blesses us with a clear path, the ramifications of walking the road can haunt us for years afterward. “Luckily, I knew what her wishes were,” a friend recounted to me after her mother’s death. “But watching her die over the course of two days was unbelievably heart wrenching.” Death originates in sin. Even when we guard ourselves with discussions and advance directives, its impact shakes us to our bones and casts a shadow over our hearts that can linger long after we have said goodbye.
