An Open Letter to the Child Facing End-of-Life Decisions for a Parent

This article is part of the Open Letters series.

Dear brother or sister,

We know these moments loom, hovering like shadowy specters as our parents’ bodies break down and give way. We worry about them as we watch a father’s gait waiver, or when we note the blunting of a mother’s characteristic wit. But as if brushing away smoke, we banish the thought that our parents will one day leave us. There are still too many celebrations that require their silhouettes, too many times when we need them to welcome us home, and to assure us that all is well. Too many wounds still throb unhealed. Too many words remain unsaid. And so we tuck our fears into the remote corners of our minds, the ones enshrouded in dust we never sweep clear.

Even now, as the doctors lean forward across a conference table in their white coats, their expressions severe, nothing seems real. Their words garble together, foreign mantras recited underwater. They talk about decisions, about ventilators or CPR. They talk about a need to act.

Between Life and Death

Kathryn Butler

This book aims to equip Christians facing end-of-life decisions by simplifying confusing jargon and exploring biblical principles families need in order to navigate the transition from this life to the next.

They don’t acknowledge that your heart is breaking. They don’t know how you feel ripped apart from the inside, how this weight threatens to crush you. How can you make rational decisions while flailing in grief? How can you think about withdrawing a respirator, when your every fiber aches to cling to your mother or father, to rest your head over a familiar heartbeat and beg him or her to stay? Even if you know your parent’s wishes, and even if you can discern the path forward, the steps feel too ghastly to undertake, the burden too heavy.

But you don’t walk alone.

Hope endures, and in these last moments, you can still provide a witness for God’s love in Christ.

The Lord is with you in this shadowy valley (Ps. 23:4). You may be angry with him right now. You may not feel his presence in this harrowing place of alarms and antiseptic. But he sees you (Ps. 139:7–10). Christ knows your suffering (Isaiah 53:3–4). Grief and fear drove him, too, to his knees, in that dark garden when the evils of the world bore down upon him (Matt. 26:36–46). He, too, wept over loss (John 11:33–35). Bloodied and abandoned, he endured all our pain on the cross for our sake. He knows your burdens, and draws near to you when your strength falters (Ps. 34:18, 2 Cor. 12:9).

Even amid the cinderblock and stoicism of the hospital hallways, his grace penetrates through, a shaft of light piercing the black waters. Even now, as you agonize over what to do, over what is “right,” he guides you. He offers you a hope that will endure the tumult of this moment. He calls you to follow him, to take up the cross. “Love one another,” he implores. “Just as I have loved you, you also are to love one another” (John 13:34–35).

The decisions that so overwhelm you can still be an instrument of Christian love. When illness silences your parent, you can be his or her voice. You can affirm that as an image bearer of God, he or she has dignity by design, and is worthy of love. You can set aside any bitterness and unrest that simmers in your relationship, and strive to view your parents as God sees them: cherished, forgiven, wonderfully made, and unique, with no precise equal on earth (Ps. 139:13–14, Eph. 1:7, John 3:16, Rom. 8:35).

As you grapple along the hard road, consider your parent’s mind and heart. Ask yourself who he or she is. What would he or she say, if disease had not stolen speech? God calls us to engage with one another in humility and compassion (Mic. 6:8). Careful thought about the temperament, stories, and passions interwoven into your parent’s life can guide you toward caring for him or her. As we consider such questions, the choices pass from our hands, into those for whom we speak:

• What matters most to my parent? What drives him in life?
• What comments has she made in the past regarding end-of-life care, if any?
• What are his goals? In the short term? For his life in general?
• What is she willing to endure to achieve those goals? What would she be unwilling to face?
• How well in the past has my loved one tolerated pain? Dependence? Disability? Fear?
• If he could speak for himself, what would he say about the current situation?

One day, when he returns, Jesus will wipe away every tear from every eye, and make the splintered fragments of creation new (Rev. 21:4). One day, this talk of ventilators, of failing bodies and anguished goodbyes, will vanish from memory. But for now we trudge on through the mire, through the depths (2 Cor. 5:1–4). Christ has conquered death, but while we await his return our cells still degrade and burst, our memories fade. Our loved ones wither away before our eyes. And so you find yourself in this conference room, in this dreaded conversation. The choices confront you. You recoil as they bare their teeth.

Yet hope endures, and in these last moments, you can still provide a witness for God’s love in Christ. Call on the Lord, and he will sustain you (Ps. 120:1). Prayerfully consider the values and experiences that have infused meaning into your parent’s life, and let his or her own words guide you.

Above all, seek out reminders of Christ’s love. Pursue fellowship. Pray without ceasing. And when the time for decisions passes, rest in God’s promise, that “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).

In his love,
Katie

Kathryn Butler (MD, Columbia University) trained in surgery and critical care at Massachusetts General Hospital and Harvard Medical School, where she then joined the faculty. She left clinical practice in 2016 to homeschool her children, and now writes regularly for desiringGod.org and the Gospel Coalition on topics such as faith, medicine, and shepherding kids in the gospel.