by Between Life
If hope for meaningful recovery from brain injury persists, we should feel empowered to prayerfully pursue it. If, however, brain death occurs, or if brain injury permanently deprives our loved ones of their capacity for worship and faithful service, we need not chase after wind. We may rest in the promise of Christ’s resurrection and in the new life that awaits us when God calls us home.
Take-Home Points
Brain injury occurs along a continuum, with mild impairment on one end of the spectrum and whole-brain death on the other. The popular media, unfortunately, uses terms like coma, vegetative state, and brain death interchangeably, although they are very different clinical entities.
Coma and vegetative state refer to severe brain injuries that impair consciousness but have the potential for improvement. Prognosis in such conditions often takes months, with the likelihood for recovery dependent upon the type and extent of brain injury.
In brain death, the entire brain dies. This injury is irreversible, with no hope for recovery. Cardiac arrest usually quickly follows a diagnosis of brain death.
Pursuit of aggressive interventions in severe brain injury is an individual decision. Loved ones can rest assured that unconscious patients experience no pain, so interventions undertaken until prognosis is clear will not inflict suffering. On the other hand, we should not feel obligated to accept burdensome treatments without potential for recovery.
In the United States brain death is legally equivalent to death. However, controversies persist on clinical and ethical fronts. We should feel empowered to ask questions when a diagnosis of brain death is issued and to discuss the issue at length with trusted doctors and pastors.
Part 3
Discernment at Life’s End
10
Comfort Measures and Hospice
In this chapter we tread toward the somber moment when treatments only hurt. Until now, we have examined the intricacies of organ-supporting technology in detail to clarify when they might promise to restore our God-given lives, or when they threaten to incur further suffering and rob us of moments spent in prayer and with those we love. Now we step over the threshold to the moment when death confronts us. This transition can pitch loved ones into a tumult of confusion, guilt, and heartbreak, with long-lasting repercussions.
At the Bedside
During our discussions he reminded me of a puff of dandelion seeds, the translucent wisps barely intact, the entire assembly ready to disappear with one overzealous breath. He seemed wholly unprepared for the burden he carried.
My colleague, a senior critical-care trainee, leaned toward him across the table. “Did you have a chance to think about everything we talked about yesterday?” he asked.
He raked his mustache with his bottom teeth. “Yes.”
“Okay. Good. I’m glad you had a chance to think things over. What are your thoughts?”
His bottom lip quavered. As the tears filled his eyes, he searched both of us. “She’s my mom,” he implored. “She’s all I got.”
“I know this must be so hard.”
He studied the floor, and nervously tapped his foot against the carpet.
“It’s so hard to make decisions like this, for someone you love. But your mom is dying. We can’t cure her.”
“I know. But I can’t do what you’re asking me to do.”
“I know it’s so hard, but— ”
“You don’t know the half of it,” he shot back. “You doctors know a lot of stuff, and you’re just doing your job. I get that. But she’s my mom. I can’t pull the plug on my mom.”
“We would never ‘pull the plug,’” my colleague said. “We’re asking you to please allow us to focus on treating her pain and discomfort now and stop things that won’t help.”
“I get everything you’re saying. But I can’t do it. She’s my mom. She never gave up on me.”
I studied his face, the eyes still wet and desperate, the ends of his mustache now damp with tears. His bottom lip still quivered. The delicate scaffolding that held his composure trembled, ready to give way.
“Can you please tell us about her?” I asked. He looked at me, guarded. “We don’t know her the way you do,” I added. “What is she like? What matters to her?”
“She’s wonderful,” he said, his voice cracking. “She’s the most caring person. I know everyone says that about their mom, but she’s something special. She still makes me breakfast every morning, just like when I was a kid. She’d do that for me and my brothers after my dad died, and she had to get up at five o’clock in the morning to work. Every morning, the sun wasn’t up yet, but she made us a hot breakfast. And she still does it. She always puts us first.”
The momentary brightening of his expression faded. “I can’t let her go.”
“It’s clear you love her so much.”
He buried his head in his hands. “I can’t live without her,” he whispered as more tears came. The fluorescent lights beneath which we sat hummed, lending a sharpness and vulgarity to the room unbefitting the tenderness that poured from him. I tried to steady my breath until the tide of his grief swelled to its zenith, then inched back.
“I know she’s dying,” he finally said. “But what will I do without her?”
“If she could speak to us right now,” I ventured softly, “what would she say? What would she tell us mattered most to her?”
He thought for a long moment, then gathered himself, as if mustering what little frayed strength remained within him. “She’d say taking care of us mattered most,” he answered. “She’d want to make us that damn toast in the morning.”
“And if she knew the situation now?”
Another pause passed. Whether he peered back into unseen memories or ahead onto the grim road forward, he grimaced. He never answered my question.
“Okay,” he said with sudden resolve. “So, let’s say we stop everything. What if she’s scared? What if she doesn’t understand, and she gets mad at me?”
“We’ll make sure she’s comfortable throughout. We’ll be certain of that.”
“What does that mean, ‘comfortable?’ You doctors say stuff like I should know what it means, but I don’t.”
“It means we’ll minimize her pain and anxiety as best as we can.”
“I don’t think I can live with her being scared or feeling alone. I can’t let her think I’m giving up on her.”
“Of course not. We have medications that can help. And you can stay with her the entire time, if you wish.”
“But isn’t this killing her?”
“No. Her failing heart, kidneys, and lungs are taking her from us.”
He eyed us skeptically. “It feels an awful lot like killing. It feels like I’m giving up on her.”
Later, the respiratory therapist turned down the ventilator settings. A nurse disconnected the dialysis, darkened the cardiac monitor, and changed the medications in the infusion pumps. He sat beside her, clutching her hand in his own.
“Can’t the tube come out?” he asked.
“I wish it could, but her lungs are too sick. We don’t want her to fight for air.” He eyed the tube as if it were a serpent in the grass, a sinister thing. A nurse tucked a fleece blanket around her chin, a flimsy token of domesticity meant to soften the sterility of the hospital room, yet the blanket did little to hide the tube protruding like an appendage from her mouth.
We drew the curtain and closed the door to give them privacy. Over the next hour, through the door we could hear him speaking to her. As the peaks of her heart tracing slowed, widened, and eventually flattened into nothing, his words gave way to prayer, and then only to tears, the last gentle and raw outpourings his broken heart could manage.
Changing Focus
The news “We have no more options” can shock us and evoke anger and distrust toward physicians. What is obvious to a clinician seldom is to family members, for whom the array of infusion pumps and the wheeze of the ventilator changes little from one moment to the next. As with
this grieving son, we agonize over the right path, our loved one’s wishes, and our own grief as we cling to the person we love so dearly.
The traditionally and often carelessly wielded phrase “withdrawal of life support” conveys an unnerving sense of abandonment and offers little consolation as we face a loved one’s death. The crass and inaccurate phrase “pull the plug” further leadens our hearts with guilt. We may fear that when we admit to the imminence of dying, we give up on life and on those we love. While we may understand the futility of organ support, when the time comes to stop aggressive interventions for ourselves, our beloved spouse, or for the mother who tied our shoes as a child, “we just can’t.”
The emotional and spiritual turmoil these moments inflict persists long after ventilator machines and pumps have switched off. As death nears, the more heavily medicalized the scene, the more patients and families suffer. Research shows that a year after a loved one dies in the ICU, up to 40 percent of family members still grapple with psychiatric illness, including generalized anxiety, depression, post-traumatic stress disorder, and complicated grief.1 The questions that trouble us strike to the core of who we are as image bearers of God and who we strive to be in Christ. The burdens we shoulder in these days may sap our already depleted strength.
As we navigate these turbulent waters, we must seek courage to ask questions, to speak extensively with trusted physicians and clergy, and to take our time as we consider the subtleties of each situation. Critically, we must lean upon the Lord and pray for his mercy and guidance, that his will would be done (Luke 22:42).
Hospice Care
In an ideal scenario, we learn of a life-threatening condition while still in command of our thinking and stamina and discuss limitations of organ-supporting treatment ahead of time with our family and primary doctor. As our condition declines, our mind remains sharp, and we outline our own care: treatments we find acceptable, interventions we do not, and what matters to us most as we serve the Lord in our final days on earth. We seek richness and meaning in our days, even as our bodies wither and break down.
In such circumstances, hospice support can provide us time in the places and with the people we love. In hospice care, an interdisciplinary team, usually comprised of physicians, nurses, social workers, chaplains, and health aides, provides medical care with a focus on symptom control and quality of life rather than cure. Staff partner with us to determine the activities and values most dear to us and help us to achieve our goals in the waning days.
Although medical centers and specialized facilities offer hospice services, hospice care may also allow a significant number of us to spend our final weeks and months at home. In one study of forty thousand cancer patients, 75 percent of those not in hospice died in hospitals or nursing homes, compared with only 14 percent of hospice patients.2 For those of us who do not imminently require organ-supporting technology, hospice care may offer solace, comfort, and a peaceful environment, in contrast with the sharp edges and mechanized atmosphere of the ICU.
People considering hospice often voice concerns that a focus on symptoms rather than cure will speed death. Ironically, research suggests that oftentimes hospice improves survival. People with lung cancer, pancreatic cancer, and congestive heart failure who elect hospice survive significantly longer compared with those who pursue aggressive treatment, with a prolongation of life of up to one hundred days in the case of heart failure.3 This point merits emphasis: in the final stages of chronic illness, stopping aggressive treatment can prolong life. Worded alternatively, at the end of life, if we insist upon dubious treatments, we can actually shorten the God-given life we’re fighting to steward. When our last days near, choosing to spend them intentionally, rather than in an institution connected to a ventilator, may not only enhance our moments but also increase their number.
Hospice can also enrich our last days. One study of cancer patients demonstrated no difference in survival among those who elected hospice compared with aggressive end-of-life care, but did reveal that hospice patients reported significantly higher quality of life before death.4 Furthermore, hospice services cut the incidence of post-traumatic stress disorder and complicated grief among caregivers by 75 to 80 percent.5 With its focus on time well spent, hospice can help us focus on prayer and on the relationships with which God has blessed us. It provides opportunities for preparation and closure, confession, and reflection upon the truth of the resurrection and the powerful hope it confers.
Despite its clear benefits, we seldom take advantage of hospice. In one study of over two hundred thousand cancer patients eligible for hospice care through Medicare, only 20 percent pursued such services before death.6 When we do seek hospice, we often decide upon it too late, after illness has already gravely impaired us. Fifty-five percent of participants enroll in hospice less than a month before death,7 despite research demonstrating worse quality of life and greater dissatisfaction among caregivers of those in hospice for less than thirty days.8
Although insurance coverage issues and delays in physician referrals contribute to hospice underutilization, these statistics also warn of our own inclination to pursue futile care. In general, a life expectancy of six months or less makes us eligible for hospice. Reaping the benefits of hospice requires we acknowledge this prognosis and accept that death is near—a reality few of us face willingly. As we explored in the beginning, however, as Christians we cling to the hope that death is not the end. Our faith in Christ assures us of a restoration of our bodies and a new order where no sickness, infirmity, or death blots the glory of God’s creation (Rev. 21:4). Silhouetted against this promise, our frantic strivings with contraptions that rob us of moments with those we love seem all the more futile, a chasing after the wind (Eccles. 2:11). Through hospice, medicine inches toward a standard in which it too often fails: in treating not only the failing organs, but the person—body, mind, and spirit—intricately woven in the image of God.
Comfort Measures
While we all yearn for the home that has shaped our memories, when critically ill we are often too sick to survive an ambulance ride home from the hospital.9 As a result, even when treatment is futile and we discontinue aggressive interventions, many of us remain in the ICU until death.10 To guide us through these moments, ICU physicians shift their focus from cure to comfort. In “comfort measures only” (CMO), physicians discontinue interventions that induce pain and agitation and in their place provide treatments to control symptoms. Continuous infusions of narcotics to treat pain and alleviate shortness of breath are a mainstay, as are intermittent medications to relieve anxiety.
As severe illness incapacitates our loved ones, the responsibility for decisions about comfort measures often falls on our shoulders. As with the gentleman at the start of the chapter, this burden can seem unendurable. The inappropriate but often-used term “withdrawal of care” conveys a sense of abandonment that repulses us. We worry that once organ-supporting technologies are discontinued, medical staff will lose interest in our loved ones, deserting them in their hour of most dire vulnerability.
In our consternation we may further confuse comfort measures with euthanasia or physician-assisted suicide, both unbiblical interventions that intentionally speed death (see chapter 11). More than once during discussions about comfort measures, families have folded their arms across their chests and declared to me, “No mercy killing!” With our loved ones’ lives at stake, such defensiveness is expected, even laudable. However, a critical distinction between euthanasia and comfort measures is the intent. Euthanasia intends to end life, usually through lethal injection. Comfort measures, in contrast, seek to discontinue interventions that prolong suffering without benefit. In the transition to comfort care, the underlying illness causes death. Medicines are given to palliate symptoms, not to end life. Additionally, when a medical team approaches comfort measures properly, care always continues. Intensive, compassionate, and personalized medical attention never stops; its focus only shifts away from aggress
ive and futile technology and toward peacefulness as death nears. ICU nurses are trained to perceive signs of distress. During the last hours, they remain at the bedside continuously to assess a dying patient’s needs and to adjust infusions.
Even so, in the United States, ICU staff vary in their capabilities to provide comfort measures to the satisfaction of families.11 Should any concerns arise, we should feel empowered to ask questions and to request a consultation with a palliative care specialist skilled in the prevention and relief of suffering during severe illness. Although they provide recommendations at all stages of disease, palliative care physicians have extensive experience in death and dying. In fact, their involvement at the end of life so improves quality of care in the ICU that national organizations have developed guidelines to promote their consultation.12 As we endeavor to care for our loved ones, as Christ loved us (John 13:34–35), discussions with clergy and physicians from multiple disciplines—including palliative care—are paramount to ensure optimal care and to guard against doubt, suffering, and regret.
What to Expect with Hospice
If you recognize the advancing twilight before critical illness claims you, hospice may equip you with the support to finish life in faith, peace, and service. In hospice, a team of practitioners meets with you to discuss your most troublesome symptoms and to devise a regimen to control them. Even more importantly, physicians and nurses discuss matters most important to you: your goals at the end of life and whether you can attain key aims in the remaining time. Our aims can evolve as time passes; hospice staff will reassess your situation frequently to help you live your days meaningfully. As your disability worsens, support increases. Staff also educate family members on what to expect as death nears and provide teaching and emotional support throughout.
