by Between Life
What is the best foreseeable outcome if I accept or continue dialysis?
Any treatment we accept should help us to leave the hospital, to engage in activities we find meaningful, and to interact with those we love. When dialysis extends life without promise for recovery and discharge from the hospital, we risk prolonging the process of dying.
If my kidney failure is new, what is the likelihood that my kidneys will ever recover? Will dialysis be temporary or permanent?
The probability of being weaned from dialysis after recovery from a life-threatening illness depends on individual medical problems and the cause of kidney injury. In some circumstances, e.g., among patients with severe cardiovascular disease, physicians can easily predict long-term dialysis dependence. Often, however, clinicians cannot make an assessment until the acute illness improves. If doubt exists, and if no progressive terminal illness threatens life, it is reasonable to pursue dialysis for a short term, until time clarifies prognosis.
If dialysis will continue long-term, how will it cause suffering? How will it benefit me?
The answers to these questions differ for each of us. Those of us still blessed with vigorous health may find the inconvenience of hemodialysis a small price to pay for continued time engaged with family in the pursuits dear to us. Those who already struggle with incapacitation, however, may find the rigors of dialysis unbearably burdensome.
* * *
When these questions point us toward withdrawal or refusal of dialysis, we must surround one another with prayer and support. The timing of death from acute kidney failure varies, but, on average, within one week toxins accumulate within the bloodstream to steep us in coma. In the most severely ill among us, the time course may be shorter. Our mandate to love one another, as Christ loved us (John 13:34–35), is never more critical than in these moments.
Whatever our struggle, however we strive, let it be for the glory of God. Remember the cross. Remember that whatever our circumstances, Christ has overcome death. “As each has received a gift, use it to serve one another, as good stewards of God’s varied grace: whoever speaks, as one who speaks oracles of God; whoever serves, as one who serves by the strength that God supplies—in order that in everything God may be glorified through Jesus Christ. To him belong glory and dominion forever and ever. Amen” (1 Pet. 4:10–11).
Take-Home Points
Our kidneys filter wastes from the bloodstream and maintain a normal balance of electrolytes and acid.
Kidney injury occurs commonly in the ICU, and the majority of patients recover. A small percentage of the most severely ill, however, may require dialysis either temporarily or long-term.
Dialysis replaces kidney function, most commonly by filtering blood through a machine.
Chronic dialysis use allows patients to survive with kidney failure for years but does impose burdensome physical effects, as well as detriments to lifestyle and independence.
Patients who require dialysis are often quite sick at baseline and have a high mortality rate.
Discussions about whether to pursue dialysis should focus on the needs of each individual, with careful attention to other medical conditions and the degree of suffering that dialysis inflicts.
9
Brain Injury
The brain serves as the control center for the rest of the body.1 Our patterns of awakening and falling asleep originate within the brainstem. Hormones that control our metabolism, our temperature, and the characteristics that make us male and female arise from the brain. So do our memories and dreams, our fears, our decisions, and our abilities to compute arithmetic and contemplate Shakespeare. Our brain sends command signals to our muscles whenever we lift a child into our arms. When we admire the sunrise, nerves carry the information from our eyes to a visual processing center in the brain, and a network then effects changes in separate areas to elicit wonder and to compare the palette of colors with other inklings of beauty.
The functions of the brain are so highly complex and interconnected that we have limited capacity to support the brain and virtually no technology to replace it. Dialysis can substitute for failed kidneys. A ventilator delivers oxygen to compromised lungs. Yet no intensive-care technology can reproduce the intricacies of a memory or restore emotions. Brain injury dismays caregivers because its effects can devastate patients, and yet we have a meager arsenal against it.
At the Bedside
He was barely a teenager. As I examined the gunshot wound in his head, I struggled to focus on my duty rather than the horror of it all. Paramedics found him unresponsive, not breathing. An endotracheal tube jammed into his windpipe elicited no response—not even a cough or a gag, let alone wakefulness. When I flashed a penlight into his eyes, his pupils remained dilated and fixed, impervious to all glimmers of life.
A battery of tests confirmed brain death. When we met with his mother, the patient’s blood pressure had already precipitously declined. His heart rhythm adopted an erratic pattern on the monitor.
After tears, she leaned toward him and searched his face. Years of laughter, trials, and memories illuminated her eyes. “God blessed me with the most wonderful child,” she said. “And now he’s called him home.”
Months later, another teenager arrived at the ICU with severe head trauma. His exam and tests also pointed to brain death. Another boy we could not save. Another heartbreaking conversation.
I sat with the patient’s father, and my colleagues and I delivered the grim news in measured beats. Afterward, I leaned toward him to narrow the expanse between us. He sat motionless, his arms folded across his chest, his gaze like stone.
“No,” he said after a pregnant moment. “He’s going to live.” He pointed an index finger skyward. “From Jeremiah: ‘Nothing is too difficult for God. With God all things are possible.”
Framing the Problem
These two cases capture the anguish and misunderstanding that surround brain injury. Clinically, both patients mirrored each other. Both were teenage boys. Both had devastating head trauma leading to brain death. In both cases, their parents responded with grief, and with faith. Their loved ones’ remarks, however, reflect opposite ends of a spectrum. In the first case, the patient’s mother voiced her acceptance of God’s authority and of the inevitability of death. In the second, a grieving father clung to his conviction that the Lord would cure his son, regardless of a doctor’s counsel that the injuries were fatal.
Although we cannot know the stories, grief, and spiritual journey that informed each parent’s response, their reactions reflect the confusion that besets families of brain-injured patients. Numerous factors contribute. News outlets use the terms coma and brain death interchangeably, despite marked differences between these conditions. Tragic, controversial cases, such as that of Jahi McMath, further vex the public and heighten distrust of doctors.
Perhaps most unsettling, from the doorway, patients with brain death may appear identical to those with reversible injury. Both types of patients may require a ventilator to support their breathing. In brain death the heart still beats for a while, and initially the skin appears flushed and feels warm. Brain dead patients may even move. These reflexive movements—arising from the spinal cord, not the brain—can deeply perplex and distress loved ones and stir up distrust of a physician’s assessment.
Differentiating between brain injury states requires neurological examinations and adjunct tests, information few loved ones feel equipped to decipher in the midst of devastating news. Understanding begins with clarifying the terminology wielded with such haphazardness in popular media.
An Introduction to Brain Injury
Brain injury occurs in stages. In primary brain injury, an initial insult—e.g., a trauma, a stroke, a ruptured aneurysm, or a prolonged lack of oxygen (as with cardiac arrest or near drowning)—damages brain tissue. Brain tissue swells in response to injury, as all tissues do. (Consider how a finger warms and reddens when cut or broken.) The skull is a rigid, closed space that cannot e
xpand, so when brain tissue swells, the pressure within the skull increases. In severe brain injury, this rising pressure impedes blood flow to and from normal brain cells. As a result, after severe trauma or a stroke, initially spared areas of the brain can suffer secondary damage from lack of oxygen-rich blood.
Medical and surgical efforts to support us after brain injury focus on limiting this secondary brain damage. In the most extreme circumstances, surgeons remove a portion of the skull to relieve pressure. In other cases, they guide a monitor into a space within or surrounding the brain to measure pressure. Such measurements guide ICU physicians in the administration of medications to reduce swelling. Doctors also sedate us, tightly regulate our breathing, artificially increase our blood pressure, and cool us to a normal temperature all to reduce swelling, improve blood flow, and give uninjured areas of the brain the best chance to survive.
Untangling Definitions
In focal brain injury, we suffer impairments in specific areas, e.g., in movement of one side of the body or in the ability to speak. Depending upon the degree of disability, as well as such factors as age and pre-injury health, we may improve with aggressive physical, occupational, and speech therapy. Neurologists can offer guidance regarding the anticipated extent of recovery.
In contrast, the most devastating brain injuries—those popular media most often misrepresent—impair consciousness. When damage affects either the entire cerebral cortex or areas of the brainstem responsible for arousal, coma results. In coma, you are unconscious and unaware of your surroundings. You may breathe independently, but you do not respond to any stimulation.
Slightly less damage may produce a vegetative state, in which you have sleep-wake cycles and open your eyes but do not respond to the environment. The term vegetative understandably upsets families, who may associate it with vegetable. The phrase actually derives from Aristotle’s three forms of life, with vegetative indicative of the capacities for nutrition and reproduction but not thought. If you are in a vegetative state, you are wakeful but unaware of the people and events around you.
In coma and vegetative state, you often improve only minimally; however, upon first diagnosis you still have potential for some recovery. Your restored function may range from dramatic to minimal to nothing at all. You may depend upon nursing and medical care for the rest of your life. With regions of the brain intact, however, some improvement is possible.
Brain death constitutes a different category. In whole brain death, injury is so catastrophic that all brain tissue dies. As the control center for the body, when the brain dies, the other organ systems soon follow. Unlike coma and vegetative state, tissue injury is total and irreversible, without potential for recovery.
Coma and Persistent Vegetative State
In some cases of severe brain injury, imaging studies (i.e., CT scans and MRIs), combined with bedside neurological exams and a review of risk factors (advanced age, poor stamina, nontraumatic type of injury), warn of a poor chance for recovery quite early. In such circumstances, we must partner with physicians to determine the best course of action, and lean into Christ, the perfecter of our faith (Heb. 12:1–3).
In other cases, doctors cannot predict improvement immediately. In fact, guidelines recommend against labeling a patient’s vegetative state as “persistent” (i.e., expected to be permanent) earlier than three months after an inciting stroke or cardiac arrest.2 Cases of head trauma require even more time, with uncertainty persisting for up to a year.3 Practitioners must also be vigilant to rule out locked-in syndrome, a condition in which you are awake and aware, but appear to be in a vegetative state due to widespread paralysis.
Although miraculous stories populate the media, most commonly “improvement” in severe head injury means progressing from coma to a persistent vegetative state, or from a vegetative state to consciousness with severe disability. As you are unconscious, if you are in a coma or vegetative state you experience no pain or discomfort; interventions to extend life until the prognosis is clear will not inflict unnecessary suffering. However, the longer we require twenty-four-hour care for our basic needs, the more complications we accrue: pneumonia, wound infections, bed sores, tube dislodgements, and life-threatening blood clots. In cases without hope for recovery, aggressive measures such as tracheostomy, long-term mechanical ventilation, and artificially administered nutrition may prolong dying rather than preserve life.
If, as we consider our own lives, we cannot envision serving the Lord under such circumstances, we need not accept or pursue feeding tubes and ventilators for chronic, severe brain injury. However, our aim in forgoing such interventions should never be to speed death (Ex. 20:13). Food and water should still be offered to us by mouth, if possible. Care should never cease, although as we will review in the next chapter, its focus may shift from cure to comfort. While forgoing a feeding tube may hasten death, our intent must be avoidance of burdensome treatment, not quickening demise. Compassion and mercy—and fear of the Lord—must drive us (Hos. 6:6). When we care for brain-injured loved ones amid our own shock and despair, we must focus on the commandment to love one another (Mark 12:30; John 13:34) and consider how a loved one would direct his own care if he still had a voice.
The Difficulty of Brain Death
Brain death, or “death by neurologic criteria,” occurs when the entire brain dies from lack of blood flow. Prior to advances in intensive care, brain death and cardiopulmonary death—i.e., cessation of breathing and heartbeat—happened concurrently.4 When the brainstem died, breathing stopped, oxygen levels plummeted, and cardiac arrest occurred. In modern ICUs, however, ventilators interrupt this process. Brain dead people have no functioning brain cells, but if a ventilator artificially provides oxygen, intrinsic cardiac pacemakers separate from the brain drive the heart to beat for a time.
In the majority of cases, this time of continued heartbeat remains brief. Most brain-dead people develop cardiovascular collapse within hours to days, in spite of aggressive ICU interventions.5 In the majority of cases, when our brain dies, the rest of the body quickly follows.
In 1980, the Uniform Determination of Death Act (UDDA) legally recognized death by neurologic criteria in the United States.6 According to United States law, we die either when our heart and lungs stop working or when our entire brain dies. The rationale follows that as the brain is the “control center” of the body, when the brain dies, life cannot persist.
Both medical and Christian establishments have affirmed the stipulations of the UDDA. The American Academy of Neurology has published guidelines on brain death determination since 1995.7 In its ethics position statement, the Christian Medical and Dental Association likewise recognizes “irreversible cessation of all clinical functions of the entire brain” as death.8 Even the Catholic Church has officially legitimized death by neurological criteria.9
However, for a parent at the bedside of his beloved teenager whose cheeks still sport the ruddy blush of youth, these claims can seem impossible to embrace. Even after death of the brain, spinal cord reflexes can trigger movements such as turning the head, flexing the fingers, and raising the arms. Such movements offer no hope for recovery, yet they can mimic a response to a mother’s voice or squeezing a brother’s hand. We may not grasp that a loved one will never breathe again, or perceive, or think, but we understand a hand squeeze. Such reflexive movements elicit from us a visceral response, raw with love and desperation.
How can Scripture guide us during such devastating circumstances? How can we focus our prayer, when doctors utter words we dread to hear?
Sanctity of Life
The Bible teaches that life is God’s sacred gift to us: “He himself gives to all mankind life and breath and everything” (Acts 17:25). As our Creator, he formed us from the dust and fashioned us in his own image (Gen. 1:26; 2:7; Ps. 139:13). He charges us to protect the life he has created (Gen. 2:15; Ex. 20:13).
A brain death determination often requires us to trust the assessment of a physician whom w
e have never met. Given the stakes, we should feel empowered to ask questions. Despite nationwide legal recognition of brain death, the United States has no national, evidence-based standards of brain death determination. Diagnostic practices vary across regions and institutions.10 University hospitals in the United States usually adopt an institutional protocol for brain death declaration, and physicians should review the details of the protocol with families upon request. At minimum, a diagnosis of brain death requires that no other condition contributes to a patient’s poor neurological exam. Patients must have a normal temperature and blood pressure, without evidence of intoxication, poisoning, severe infection, or electrolyte imbalances. Further tests at the bedside, including a test for the drive to breathe, establish the absence of cerebral and brainstem function. Any doubt of the diagnosis after such tests can be explored through additional studies to evaluate blood flow within the brain.
With our loved ones’ lives in balance, we have every right to ask explicit questions about how the medical team has reached a determination of brain death and to seek counsel from a member of the clergy whom we trust. We are God’s handiwork (Eph. 2:10). As those who cherish God’s workmanship, we are entitled to understand the death of our beloved in detail.
In Death, New Life
Death, even brain death, does not mark the end. In the wake of the cross, we find an everlasting hope. Even while we mourn, and while we wrestle with anguish, we rest assured that Christ has already overcome and has swallowed up death in victory (1 Cor. 15:54–55). Those who fall asleep in Christ will join Christ in resurrection (1 Thess. 4:13–14). Paul writes that “neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers . . . will be able to separate us from the love of God in Christ Jesus our Lord” (Rom. 8:38–39). And that truth sustains us, beyond the horror, beyond the tears, into the arms of our Savior.
The promise of God’s grace may sustain us even when we’re unsure if a loved one is a believer. Whatever our loved one professed during consciousness, only the Lord knows the heart. And we serve a God of abundant goodness. When we anguish over the fate of a loved one, we can lean into Abraham’s profession: “Shall not the Judge of all the earth do what is just?” (Gen. 18:25)
