8. Sustaining Life, but Not Prolonging Death
If I expect life to be unending, then dying seems to be an illusion. If I live life as a vocation, then dying is an intrusion. If life is a threat, then dying is an escape. If I accept life as a gift, then dying is a part of the given.
GLEN DAVIDSON
My father should have been raised as a cowboy on the open plains. Actually, he almost was. Born in 1900, he led a rough-rider life, trading with Native Americans in the Northwest and scaling the highest peaks of the Rockies. I loved following in his footsteps, riding fast horses, hiking high mountains, and camping under the moon and stars. Dad was my hero.
When I was little, he took me and my sisters to see a movie about Eskimos called The Savage Innocents. I was troubled by a scene in which an elderly Eskimo who was dying was left behind on an ice floe. We talked about it on the way home, and although I can’t remember my father’s words, I knew Daddy probably would have chosen the same path.
I forgot about that movie until decades later when my father became physically and mentally debilitated by a series of strokes that left him virtually bedridden. It was the long-feared nightmare that we, while growing up, always pushed from our minds. Our ninety-year-old dad was but a shadow of his former self. His withered, bony frame couldn’t hide the undaunted spirit that twinkled from his blue eyes, and it crushed our hearts to think that Daddy was probably going to die within a year—maybe months or even weeks.
The family house in Maryland was sold. Mother moved Dad and herself to Florida, where he resided in a cheery little nursing home. Mom walked from my uncle’s house to the nursing home every morning to care for her husband’s needs and then returned at night after he was in bed. My sisters and I often visited, and Linda, Jay, and Kathy frequently stretched their visits so they could help our mother and dad.
Then, in a span of less than two weeks, everything changed. My father began to quickly fail. He was rushed to the hospital. An IV was inserted. The tube was later removed when his body bloated and his lungs filled. He was sent back to the nursing home. Our family collapsed in exhaustion. We agonized and conferred with doctors. After much prayer and painful discussion, we made a decision: no feeding tube. It was clear Daddy was dying, and knowing my father, he would not want the process of his dying prolonged. My sisters and mom tenderly cared for Daddy around the clock during his last days, camping on couch pillows by his bedside and giving him what little water he could take in.
In that little nursing home, my mother had sat vigil with Dad for more than a year and a half, helping him daily and spreading the joy of the Lord to every elderly person up and down each hallway. In his last week, I joined my sisters and Mom there. It was obvious Dad was failing fast.
I had to leave after a few days. It was a tearful departure, knowing I’d never see my father again on this side of eternity.
Within days, I received a phone call from Jay.
Daddy had passed away.
My sister told me how Dad had turned to my mother, opened both his blue eyes for the first time in days, gave her a big smile, and languished for a moment in what they emphatically described as a “glow.” It must have been the glow of God’s presence, because then . . . he took his last breath and passed away.
My mother, sisters, a recreational therapist, and a nurse held hands around his bed and sang a doxology. I knew it was a fitting end to Daddy’s life. From there, my sisters canvassed the hallways, telling people, “Daddy just went to heaven to be with the Lord. Isn’t that exciting?”
When It Comes to Dying, We Need the Wisdom of God
Who would have dreamed the day would come when the family of a dying loved one would have to study a medical dictionary to discern exactly what “dying” was. We all wish dying were as simple as “Naked I came from my mother’s womb, and naked I will depart. The LORD gave and the LORD has taken away.”
It seems like it should be simple. God gives life; God takes life away—and there’s a line between the two. But where is the line? Has modern technology thrown a monkey wrench into the way God gives and takes life? Has modern medicine presented God with problems to which even He has no answer?
If God has given man tools with which to sustain life, it would seem impossible to outrun His wisdom. God, by nature, can’t say, “Well, people, I don’t know what to do about those machines and treatments you’ve invented. They’re new to Me. You’ll have to make those decisions in your realm because I can’t comprehend it all, much less offer wisdom.”
God doesn’t operate that way. If He provides man with the talent to advance and invent on behalf of life, He must also provide the wisdom to make decisions. And the question begging wisdom is this: What is the distinction between providing a person with all the life to which they’re entitled as opposed to artificially prolonging the process of their death?
Most of us wish that someone else would do the moral choosing for us, just explaining flat-out the differences. Some people look for wisdom by polling the majority, asking what “most people” would do. Others go with their gut feelings, ranging in degree of certainty from “I think I know what’s best, but don’t ask me to explain it” to “I’m absolutely right about this.” Many people rely on their conscience, which is a little better than going by feelings, but it still falls short. None of these are reliable because feelings vary, the majority is often wrong, and an armor of conscience is only as dependable as its weakest piece. There must be a better place to find wisdom.
God Gives Necessary Wisdom for a Particular Problem
The Bible is full of God’s wisdom. And from it we can derive wisdom—defined in the dictionary as the “power of judging rightly and following the soundest course of action based on knowledge, experience, understanding, etc.”
First, there are definite dos and don’ts in Scripture. “You shall not murder” is pretty straightforward. However, when there are no scriptural commands, you’re forced to look closer. Some actions are commendable; some are permitted; and some are prohibited by Scripture. The Bible is a big book, and it takes a little research to decipher between the “don’t dos” and the “maybe dos.”
Second, since the Bible is a book to be applied in practical living, we next need to consider the many different situations that a person can face today. Use of a ventilator may be good in one situation and bad in another. Kidney dialysis may be appropriate for one person but not the next. Chemotherapy may be great for some but wrong for others. Lower limb amputation may be considered an ordinary procedure on a forty-seven-year-old with diabetes, but on a ninety-year-old, it may be a futile and burdensome one.
Once we have considered these situations, we need to understand what Scripture says about a particular situation to determine what is morally right.
So let’s go back to the example of the ventilator. It may look easy to unplug a life support, but Scripture demands that we examine our judgment through the lens of God’s Word. Look closely. Scripture says that life is precious. That suffering people should have every access to God’s grace. That love for God and love for others are paramount. That motives are important. That conscience cannot be violated. And so on.
These guidelines and others from Scripture have a powerful bearing on whether we are free to pull the plug. They should guide in every situation, eliminating slipshod ethics and “tragic moral choices.”
That’s what wisdom is all about—employing knowledge and experience to judge the soundest course of action. And when my family sought wisdom for Dad’s situation, it was helpful to be able to reach for a verse from the shelf of theory and use it in the hospital ward, where our decisions had to be made.
A good word on wisdom is James 1:5–6 (Phillips, italics mine): “If, in the process, any of you does not know how to meet any particular problem he has only to ask God . . . and he may be quite sure that the necessary wisdom will be given him. But he must ask in sincere faith without secret doubts.”
Right there, God supplies almost half the answer for our need. As James says, God promises to give necessary wisdom for a particular problem—that is, wisdom tailored to the problem at hand. Custom-fitted wisdom is needed for discerning particular living or dying distinctions. And because it involves the life and death of a warm-blooded human being, each distinction is subjective—definitely not objective. Every situation is different; every person is unique.
So when it comes to the “pull the plug” question, don’t waste your time looking for rules, three-step plans, and a tidy list of dos and don’ts. My family couldn’t superimpose on Dad the experience of other families in that nursing home. In the same way, you can’t take my family’s decision and overlay it like a template on your family’s situation. It doesn’t work that way. Even a former Surgeon General, a doctor in the highest medical office in the United States, once wrote regarding the prolonging of life, “There is no way that there can be a set of rules to govern this circumstance. Guidelines perhaps are possible, but not rules.”
Yet don’t be overwhelmed and throw your hands up in despair. Your process of making personal decisions is as close as your doctor, family, and clergy. Insight for making distinctions can be drawn from the experience of a caring physician, the condition of the dying person, and the input of family and counselors who know the value of life. Historically, life and death decisions have always been made this way. Proverbs 11:14 (ESV) tells us, “In an abundance of counselors there is safety,” and wisdom is gathered from a physician who knows the facts, a patient who has expressed his or her wishes, a family who is looking out for their loved one first and foremost, and a pastor who can give godly guidance.
A good relationship between physician, patient, family, and pastor can be the wellspring of wisdom. But underline the word relationship. Unfortunately, the care, trust, and confidence that once marked the fraternity between a doctor and a patient—or the bond between a pastor and a family—have been replaced by changing standards and, for some, near anonymity. It’s rare to find families who have been able to build relationships with a physician or pastor. This requires trust, time, and commitment—and none of these are plentiful in today’s culture.
But I encourage you to seek out those up-close and personal relationships to help you discern what is best for a dying family member. Perhaps instead of a pastor, another mature Christian leader could give counsel. And if you feel that a physician only relates to you on a paid-for-service basis, it may be time to request a different doctor.
Wisdom in the Life and Death Setting
James 1:5 implies that a lot of wisdom is already revealed. Remember those commands? The obvious dos and don’ts? Life is a good and God-given thing; it is the most fundamental and irreplaceable condition of the human experience. God is the first one who said, “Choose life,” so it’s always wise to err on the side of preserving life. We should assume that living is preferable to dying. So go ahead and choose those directives that would be “life beneficial” to a person.
But is it wise to prop up a person in the final death throes with more treatments and machines? Of course not. Dying begins when a person rapidly and irreversibly deteriorates. This is a person for whom death is imminent, a person who is beyond reasonable hope of recovery. Such people have a right to not have death postponed.
The line of distinction is not so much between life and death as it is between life and dying. There are pages in medical dictionaries devoted to defining imminent death. But because the people who are “imminently dying” are unique, warm-blooded human beings in unique circumstances, it’s impossible to pin down exactly when the process of dying begins. The Patients Rights Council, an educational and research organization that addresses end-of-life issues, says that true imminent death spans a period of days, perhaps hours. However, courts in some states widen the span of imminent death to a matter of weeks, and some say months. That’s why a good relationship with your family’s doctors is so critical. You need to get as close to the facts as possible.
There’s a point, though, when it’s futile and even burdensome to go into a full-court press against death, using every last bit of high-tech, heroic treatment available. We can lean again on the wisdom of Dr. Koop:
If someone is dying and there is no doubt about that, and you believe as I do that there is a difference between giving a person all the life to which he is entitled as opposed to prolonging the act of dying, then you might come to a time when you say this person can take certain amounts of fluid by mouth and we’re not going to continue this intravenous solution because he is on the way out.
This is what “death with dignity” is supposed to be all about.
Okay, so it’s possible to gain wisdom about life and dying distinctions. Now what do we do with that wisdom? James 1:5 goes so far as to warn us against asking for wisdom while holding on to secret doubts. It is over this point that so many people stumble.
God demands that we examine our motives. Some people may secretly want a loved one to die to relieve the family’s suffering or out of economic considerations or misplaced sympathy or perhaps even out of convenience for the caregivers or society. Think back to what I said in chapter 3. Whether an action qualifies as euthanasia centers on one word: motive. If family members insist that IVs and tubes be withheld or withdrawn because “Dad’s best years are being wasted taking care of Mother,” or “They left that nest egg for us, not for paying hospital bills,” then secret doubts can take precedence over God’s wisdom.
What about Life-Support Systems?
The death of my father taught my family about finding wisdom in helping my dad live and in letting him die. Giving food to the hungry and water to the thirsty is a requirement of basic decency. And even when it was clear that my father had entered the irrevocable process of death, we wanted to make him as comfortable as possible. This is part of the revealed wisdom of God that mandates compassionate care. It’s one of those scriptural dos.
However, doctors advised my family that there are situations where giving food or water, whether by mouth or by tube feeding, is futile and excessively burdensome. Rita Marker of the Patients Rights Council writes, “Patients who are very close to death may be in such a condition that fluids would cause a great deal of discomfort or may not be assimilated. Food may not be digested as the body begins ‘shutting down’ during the dying process. There comes a time when a person is truly imminently dying.”
The Christian Medical and Dental Associations affirms that “in exceptional cases, tube feeding may actually result in increased patient suffering during the dying process.”
My father was one example. Had he tolerated better the intravenous tube, had he not been dying, we would have faced a different set of circumstances. But we as a family knew his wants and wishes; we knew the way he would want to die. We had asked ourselves the important questions: Were we certain Dad had begun to actually die? Were our motives pure? Our consciences clear? Did we thoroughly seek the counsel of our doctor and clergy? Were we convinced of God’s will in this situation?
And most important, were we sure of Dad’s salvation in Jesus Christ?
Yes. Yes, to all those questions. And basic decency was lived out poignantly as Kathy, Jay, and my mother moistened Dad’s lips with ice chips and helped him sip juice when he could, and even clear broth when possible.
By the way, had my father needed extensive pain medication, our family and doctors would have done whatever was necessary to make him comfortable. As it was, my father was comfortable without medication, but Proverbs 31:6–7 makes a strong case for strong analgesics: “Let beer be for those who are perishing, wine for those who are in anguish! Let them drink and forget their poverty and remember their misery no more.” In the context of Proverbs, strong drink is usually an alluring, deceitful thing, but in these two verses, its anesthetic and analgesic qualities are commendable for those who are dying or “in anguish.”
My family made these decisions based on an understanding of Scripture and my dying father’s situation. But what about the families of people in comas or persistent vegetative states? What about their artificial life-support systems? What about the medical treatment and basic care of people who have severe disabilities to the point where the line between life and death is drawn by a ventilator?
These are questions that would test even wise King Solomon himself!
The Person with a Disability
The first time Dan Piantine and I bumped wheelchairs, I was taken aback by the severity of his paralysis and his frail, thin body. Dan was not dying; he was simply a young man in his early twenties who had disabilities. Dan was born with a neuromuscular disease and thus never developed good muscles. Some people believed he would be better off dead than disabled. But I was impressed by Dan’s love for life, and it troubled me when people implied he was suffering needlessly or that he was imprisoned by his body. Such phrases purport to be compassionate but reveal a fundamental fear that really says, “I’d hate to live like that.”
For our brief time together, we forgot about such people. Dan and I laughed and talked about our dreams, our hopes, and God.
The second time I met with Dan, it was on a rainy, windy afternoon as he was resting inside his transparent iron lung. A recent heart attack had forced him to spend more time lying down. As I looked through the plastic cylinder, I could see how scoliosis had severely bent and twisted his body. I positioned my chair so I could watch his face in the mirror above the iron lung; I could also see when the whooshing vacuum caused his small, fragile frame to rise and fall. The rain pattered against the window, and there was a quiet and relaxed feeling inside his room.
“Joni, there was a time when I thought I’d be better off dead. I pondered the thought of removing myself from my life support. Funny thing is, I don’t think of my iron lung as a life support because there are no tubes, wires, or nurses needed. And my ‘lung’ is not what they call extraordinary care—for me, it’s ordinary. Just something to help me breathe like, let’s say, somebody who has polio.”
I knew what Dan was saying. What he was describing was necessary wisdom needed for his particular situation. What is extraordinary care for some people is plain ordinary care for others. Every person is different, each circumstance unique.
Dan continued talking. “God showed me that the definition of quality of life was wrapped up in carrying out His will for my life. No matter what my situation, God could use me.”
“We’re two peas in a pod on that one,” I laughed. I knew of Dan’s intensive efforts to educate his religious denomination on accessibility. His heart was bursting with ideas and vision. His body, however, was slowing down. I thought about his recent heart attack and asked, “Have you thought about dying? How will you face it?”
“I’ve signed a living will stating that when my condition worsens and I can no longer be kept alive by an iron lung, I refuse to accept treatment in other forms. You see, the only other treatment would be a ventilator requiring a tracheostomy. I’ve talked with doctors about this, and in assessing my condition,” he said as his eyes gestured toward his body, “I feel a ventilator would ultimately end in my death because I have so many physical difficulties. I could write a medical journal on my disease alone!”
He went on. “We’ve come so far in technology that the absolute of when life ends and death is imminent is no longer black and white. I don’t want to be caught in the gray. Hey, I’m not saying I have the right to pull myself off my iron lung this minute any more than to ask a doctor to inject a lethal drug. But when it comes to one day facing the way I’ll die . . .”
“You’ve made a judgment in advance,” I quietly said. I wasn’t going to debate his decision about using a different kind of ventilator. Dan had obviously talked with his family and his pastor. He’d had many discussions with his doctor. And although I know scores of people with severe disabilities who use trach ventilators and would vehemently argue that Dan should go for the trach, I had to respect his decision.
Why? Because Dan understood Scripture and his situation, and he worked through the process of making this incredibly important decision. I had to respect Dan’s choice because . . .
• He was mentally competent and by no means suicidal. That means he had the legal right to decline treatment.
• His motive in refusing the trach was not to hasten his death but to safeguard his best chances for life.
• He conferred with his doctor, was a disability expert, and was totally informed about his condition. He weighed the risks.
• He specifically expressed his wishes, underscoring that further treatment would be extraordinary and burdensome.
• As a Christian, Dan was headed for heaven.
When I left Dan’s room that day, it was still gray and windy. My thoughts lingered on Dan’s choices, and when I heard of his passing not long afterward, I wondered about the way I would approach death as a quadriplegic. Like Dan, I’m an expert on my disability—spinal cord injury has left me with severe disabilities, but nowhere near to the extent Dan experienced. Knowing my kind of quadriplegia, a trach ventilator would definitely not be burdensome if, let’s say, it got me through pneumonia. And even if I became permanently dependent on a ventilator as a result of pneumonia, it would not be excessively burdensome or futile treatment. Goodness, a ventilator would provide significant life benefits for me! Not so for Dan, because a ventilator could have caused serious and life-threatening complications.
So if I were to decline a ventilator during a bad bout of pneumonia, it would be the same as committing suicide. Even though we both have lived life with severe disabilities, it’s obvious that my circumstances are different from what Dan faced. There are no black-and-white rules that compel us to make the same decision.
Thus the question: When is artificial life support extraordinary and when is it ordinary? Treatment that significantly sustains life in a beneficial way is ordinary; treatment that merely postpones or prolongs the act of dying could be considered extraordinary. When I look at my friends who are on ventilators, dialysis machines, or iron lungs, it’s clear that such assistive devices are very ordinary treatment. Ventilators, “lungs,” and even catheters for people like me produce significant life benefits in relation to the discomfort and cost.
But a ventilator or a dialysis machine or even extensive, expensive surgery could easily be considered extraordinary or burdensome treatment for someone in different circumstances. Assistive devices in some cases could be uncomfortable, costly, and result in no significant life benefits. It’s another one of those subjective distinctions.
I appreciate the example of Dr. C. Everett Koop in this matter. While still in the public eye, he wrote of his end-of-life decisions:
Right now, I am seventy years old and in excellent health. If my kidneys shut down tomorrow, let’s say, after a severe infection, I don’t know how long I would want to be on dialysis. It would be foolish and a waste of resources for me to have a kidney transplant at my age. I would probably opt to clean up my affairs, say goodbye to my family, and drift out in uremia.
The important point is that my wife and I know exactly how each of us feels about the end of life. This will be crucial if the time comes to make such a decision and I’m not then able to do so.
I find it no small irony that Dr. Koop did end up dying a few days after suffering kidney failure. But it didn’t happen to him while he was hale and hearty at seventy. He died twenty-six years later. What was true for Dr. Koop in his careful end-of-life decision making played out in his nineties. For doctors to try to reverse kidney failure for Dr. Koop at ninety-six years of age would have been heroic and, it seems, intrusive in light of what seemed obvious: it would be prolonging death. Kidney failure at the age of ninety-six is a natural part of the body’s shutting down in the process of dying.
The guidelines that steer a person with a disabling condition through the maze of life and death questions are very much the same for the person who is terminally ill. A man with HIV/AIDS or a woman with cancer or a child with cystic fibrosis all may be at points in their lives where, like Dan experienced, they are living just fine with ordinary treatment. But, like him, one day they will find their condition deteriorating. They too will wonder, My doctors say I only have several months to live. Is it worth having that major surgery? These people will try their best to stay out of the gray areas of life and death decisions. They will need necessary wisdom for their particular situations.
They will need the wisdom of James 1:5.
The Person in a Coma or Decreased Level of Consciousness
Sometimes letters say it all. Like this one from the mother of a boy named Jeremy:
Dear Joni,
Our twelve-year-old child, Jeremy, was critically injured in an automobile accident. He lived, but remained in a comatose state—we later learned that Jeremy was in a “locked-in condition,” unable to open his eyes or speak. He was well nourished through a feeding tube.
We didn’t think we could communicate with Jeremy. But after two years of hard work, physical therapy, God’s grace, and money, one day it happened. When I put a softball under his hand, he very slightly moved his thumb for yes and his little finger for no. Our precious son suffered much during two and a half years, and then the Lord took him home shortly before his fifteenth birthday. God used Jeremy’s dark valley to point others to him.
Patty Cabeen
Stories like Jeremy’s are baffling. Is he in a coma—a state of permanent unconsciousness or decreased consciousness? Then there’s the term “unresponsive wakefulness syndrome” (formerly called “persistent vegetative state”). Add to that the doctor’s assessment that Jeremy was in a “locked-in condition.” To clear up the confusion, a person in a coma is in a suspended sleep state from which they may or may not awaken. A person with unresponsive wakefulness syndrome (UWS) is awake and has sleep cycles, but almost always cannot interact with those around them. Someone in a minimally conscious state is able to show some awareness of their environment beyond what could be considered reflexive responses. In addition to these more commonly recognized categories, there are also other levels of decreased consciousness. Patty’s son, with a slight move of his thumb and little finger, was able to respond to those around him but was otherwise paralyzed. That’s why his condition was termed “locked-in.”
Jeremy’s story is at once inspiring yet sad. He represents thousands who are in permanent or semipermanent comas or who have other disorders of consciousness. Many are said to be hopelessly beyond recovery. Yet there are many levels of consciousness, and recent advances in brain imaging have served to show how little we understand the intricate workings of the human brain. A recent study at the University of Cambridge showed that some “vegetative state” patients not only had the ability to pay attention to certain words, but could follow commands as well. The study suggested that specialized devices in the future might enable these patients to interact with the outside world . . . amazing.
Sadly, too many people have been called “vegetables” because of the unfortunate coining of the medical term “vegetative state.” When people with disabilities are labeled this way, they are in danger of losing personhood (and all the rights that go with being a person, including the right to life).
These persons in permanent comas or other stages of diminished consciousness are precisely those around whom the right-to-die debate gained momentum. Back in 1992, Dr. William Burke, a professor of neurology at St. Louis University, was quoted as saying, “The persistent vegetative state is being used as the hard case in order to get people used to the idea that there are some in our society whose lives aren’t worthwhile, who can be terminated.” And his words have been proven true, as the right-to-die movement has moved on to securing this “right” for people who are still active and very much alive. In Canada, death with dignity advocates are aiding a disabled woman’s case to change the parameters of the nation’s doctor-assisted death law—a law that requires a person’s death to be “reasonably foreseeable” to be eligible for medical assistance in dying. Those who oppose “broadening the availability of medically assisted dying when death isn’t reasonably foreseeable” argue that it leads to the “devaluation of the lives of people with disabilities.”
Simultaneously, individuals who have been diagnosed with a consciousness disorder are routinely misdiagnosed and under-cared-for.
Physician and bioethicist Joseph J. Fins wrote a recent article in the New York Times titled “Brain Injury and the Civil Right We Don’t Think About.” Dr. Fins tells about a young woman named Maggie, who while in college had suffered a complex stroke that involved areas deep in her brain. As a result, she was thought to be in a vegetative state—a state “most of us associate with the right to die movement and the legacies of Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo.”
But as it turned out, Maggie wasn’t in a vegetative state; she was in a “minimally conscious state” (MCS). Fins writes, “Unlike vegetative patients, those in MCS are conscious. They demonstrate intention, attention and memory.” In Maggie’s case, she was even able to communicate through eye blinks. The problem, as Fins notes, is that “these actions may be rare and intermittent, so when family members who witnessed them share their observations with staff members, they are often attributed to a family’s wishful thinking.”
In a BreakPoint commentary on this issue, Eric Metaxas writes, “MCS was not formally recognized until 2002, which prompts a disturbing question: How many people whose food and water were withdrawn were conscious of what was happening to them? A study Fins cites suggests that the answer could be ‘a lot.’ The study ‘found that 41 percent of patients with traumatic brain injury . . . and thought to be in the vegetative state were in fact in MCS.’”
We can hardly imagine the pain, the financial crunch, the tears, the trauma, and the heartache the families of these individuals endure. These mothers and fathers, and husbands or wives, are placed in the awkward position of speaking on behalf of the person in a diminished state of consciousness or a coma.
The question is usually this: Why can’t we let this person die?
It is at this exact point that I firmly put on my hat as a disability advocate. People in comas, with unresponsive wakefulness syndrome, or even in locked-in conditions much like Jeremy’s, aren’t dying (although Jeremy did eventually die of complications); they have severe disabilities. Sure, underline the word severe because some of these people can’t swallow, but others can. Some make movements that are intentional, others that are reflexive. Because they are nonverbal, they depend on the sensitive interpretations of their caregivers, just as the mother of a newborn can sense different needs communicated in a whimper. And some even dramatically recover after spending years in a coma or minimally conscious state.
But all things considered, they are disabled. And each person, no matter how severe his or her disabling condition, is entitled to treatment and care. Perhaps their biggest disability is that they are “socially disabled,” unable to interact with people around them. They are further socially disabled because public sentiment is most often marshaled against their stressed-out families. But people like Jeremy are still persons. And each one has a soul, a spirit.
I won’t take time to elaborate on the right-to-die/right-to-care debate swirling around these people and their parents, husbands, or wives, since others have written exhaustively on it. But there is one perspective about an individual with a diminished consciousness disorder that I rarely hear: The Spirit of God is able to work dramatically in the spirit of such a person, perhaps more so than at any other time in his or her life.
It may appear that nothing is taking place in the life of a man or woman in a coma or minimally conscious state, but my friend John Wessells knows otherwise. For years, John and his wife, Gail, have been in and out of facilities for people with severe brain injuries, with a singular task: to sing worship songs, pray, and read Scripture to people in comas. Remember, the work of God is spiritual activity, often very separate from a person’s intellect or even basic brain activity. John has sat alongside people who have lain in bed for years, unable to communicate or make any signs of awareness. Yet he has continued to minister in song, prayer, and Scripture reading. And many of these people have emerged from their sleep, having connected with God in an extraordinary way. John writes:
At that point . . . I was able to recount story after story of the incredible ways people’s lives had been changed. How I’d watched a comatose man tap his foot in perfect time to the song I was playing. How I’d spent time with a young man who later told me he’d become a Christian while in his coma—who had heard every word I’d sung and said to him.
How does that happen? Jesus said that these kinds of revelations are not “revealed to you by flesh and blood, but by my Father in heaven.” And God can definitely work in the lives of people who have no intellectual capacity. Just look at the example of John the Baptist. While he was yet in his mother’s womb, he leaped for joy. And even at his birth, he was filled with the Holy Spirit. Obviously, God did not need the baby to be able to process complex thought in order to make Himself known. What a profound thought. God may not require a cognizant mind through which to reveal Himself!
This is good news for people who don’t have a high IQ. It’s good news for the child or adult who has intellectual disabilities. And this is probably the only, and best, good news for the estimated twenty-five thousand people in this country who are considered to be in a diminished stage of consciousness or a coma. I’m convinced God does not need their brains, whether injured or traumatized, to reveal His truth.
And what happens when that time comes for the person in a coma or with unresponsive wakefulness syndrome to depart this earth? How can a family member rest in the knowledge that their loved one has made that right turn into heaven? As Dr. John Frame, professor of systematic theology and philosophy emeritus of Reformed Theological Seminary, concludes, “You simply commend the person to God’s mercy. Can a person be saved by God’s grace in the moments of unconsciousness preceding death? Certainly.”
Admittedly, a truckload of arguments for pulling the plugs of ventilators or feeding tubes can be stockpiled against the needs of people in comas or diminished stages of consciousness: medical expenses, quality of life, family stress, patient suffering, the precedence of court rulings, and pressure from the public. But it is for these very reasons that we should “stop evaluating . . . by what the world thinks about them or by what they seem to be like on the outside.”
Such arguments, convincing as they may be, may dictate that it’s reasonable to remove life-support systems—in spite of the fact that to do so would be active euthanasia. Rather, people like Jeremy need to be regarded from a transcendent and eternal view: “So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”
That’s Fine for Jeremy, But . . .
Let’s be honest. Maybe you could never see yourself facing life as Jeremy did. You could never live like that. You have enormous respect for Patty Cabeen and her son, but personally, you just would not want to live in permanent or diminished unconsciousness. You want some kind of control over what happens to you.
For you there is another kind of answer, which we’ll talk about in the next chapter.
Questions for Discussion and Reflection
Guidelines, Not Prescriptions
Using the guidelines presented in this chapter, discuss the following scenarios. Be sure to point out which guideline(s) you used in making the decision.
Richard, a strong Christian, is a seventy-six-year-old man who for the last twenty years has dealt with a mild form of diabetes. Lately, his diabetic condition has become aggravated due to changes in his diet and encroaching age. His family has been told that Richard needs to undergo a limb amputation to safeguard his health. His family wants him to proceed with the operation, but Richard does not want to.
As Richard’s younger brother, what would you advise? What guidelines would you communicate?
Susan, who is not a Christian, has full-blown AIDS and has contracted several infections whose combined impact has weakened her condition. She has an option of enlisting in a new drug treatment program, but she has become weary of the tireless efforts of her Christian friends to keep her alive. She would like to check herself into a hospice and give up the fight.
If you were Susan’s Christian friend, what would you do? What guidelines would you apply?
Harold, an athletic young man, just received news from his doctor that he has lymphoma. This has plummeted him into depression, since he also just went through a divorce. Harold has flat-out told his doctor that he does not want the cancer treated at all.
How would you help Harold if you were the doctor? What guidelines would you use?
Jeannie was affected in her shoulder by polio as a teen. She now is suffering post-polio syndrome and is experiencing difficulty in breathing. Her husband is especially concerned at night when Jeannie is asleep, and he fears she may be suffering from oxygen depletion. She is able to walk and can move her polio-affected arm and shoulder slightly. She’s not sure if she wants to walk around the rest of her life with a portable ventilator.
What would you tell Jeannie if you were her best friend? What guidelines would you share?
Your ninety-two-year-old father has suffered a series of strokes and has been bedridden for several years. His condition just took a turn for the worse, and he is not able to swallow. The doctor hooked him up to an IV, but his body seems to be bloated as a result of the fluid. Your main concern is that he be made comfortable.
What should you do? What guidelines would you apply?
* * *
How would you classify someone in a permanent vegetative state? Are they still a person? Read the following statement by Robert Wennberg, a medical ethicist who wrote a book titled Terminal Choices:
Those operating within a Christian belief-system may be attracted to the conclusion that death is the total and irreversible loss of the capacity to participate in God’s creative and redemptive purposes for human life. For it is reasonable for Christians to believe that it is precisely this capacity which endows human life with its special significance. More specifically, this is the capacity to shape an eternal destiny by means of decision-making and soul-making, requiring as it does, both spiritual agency and spiritual receptivity—all of which presuppose conscious existence (that is, psychic life) and not mere organic functioning (that is, somatic life). Indeed it is reasonable to suppose that human organic life has no value in its own right but receives its significance from the fact that it can make possible and sustain personal consciousness and thereby make possible the capacity to participate in God’s creative and redemptive purposes . . . When an individual becomes permanently unconscious, the person has passed out of existence, even if biological life continues.
Do you agree with Wennberg’s evaluation that a permanently unconscious person has lost personhood? Why or why not?