3. Why Not Die?
Without the incarnation, God is removed from all the pain and all the suffering of the world at its worst . . . [So] we have nothing to say to the person who lies increasingly gaunt, suffering from the encroachment of cancer. We have nothing at all to say if Jesus Christ is not the incarnate God. Because if He is not the incarnate God, what we have in Jesus is simply God’s condolences through a representative. Without the incarnation, God does not enter in and share His people’s sufferings.
ALISTAIR BEGG
Each year, more than forty-four thousand people die by suicide in the United States. It is estimated that twenty-five times that number attempt suicide each year. And the numbers have steadily risen since 2006. Add to that the number of individuals who have chosen physician-assisted suicide—in 2015, 301 people died under Death with Dignity acts in the states of Oregon and Washington alone—and we’re facing a lot of people who have answered “Why not die?” with an empty silence.
Is that the answer? Is it right to die when a person sees no hope? Is it right to die when the pain becomes excessive, the medical costs prohibitive, the personal dignity shattered? Is it right to die when life becomes too burdensome? Where should the line be drawn? And who has the right to draw it? When is it right to say, “This much I can take, and no more!”
In a way, are we each kind of like the surge protector in my office? It has six electrical outlets. A plug for my computer, and one for the extra monitor my assistant uses when she sits with me. Another for the printer. Another for my desk phone. Another for my desk lamp. And, of course, the plug for the little space heater I keep handy during the winter. This much it takes, and no more. I don’t dare plug another surge protector into the first and daisy-chain them so I can charge my headset, mobile phone, and tablet too. The IT staff in my office would have my head. Plus, who knows what electrical nightmares I would cause!
Are people like that? A terminal illness. Add to it chemotherapy. Then add radiation treatments. Then another surgery. Perhaps another. More treatment. And then something snaps. All their strength drains, and they simply can’t take it anymore.
Is that how it goes? Do we each have the right to choose the timing of our own death depending on our tolerance for pain, expense, and indignity? Of this much I am certain: There is for each of us a time to die, and when that time comes, we should be prepared to go. But the problem remains: Exactly when is it time?
When Is It Right to Die? “It’s None of Your Business.”
You want a time? I’ll give you a time, I could almost hear Arlene say. It’s when you decide. Period.
Arlene Randolph was athletic and full of life, but a fall during a hiking trip in the coastal mountains of California damaged her spinal cord. She became severely paralyzed. Doctors kept telling her that her life would brighten as soon as she learned to sit up . . . as soon as she got a better wheelchair . . . as soon as she had a special-order bed brought in . . . as soon as she got to go home. Life for Arlene didn’t happen that neatly or cleanly. As her husband, Phil, put it, “Everything that could go wrong did go wrong for her.”
A self-directed young woman, Arlene knew whose life it was—her own. It wasn’t her husband’s, and it wasn’t her two children’s. Her life was not owned by the doctors and nurses at the hospital. She was a firm believer in personal autonomy, and the life and death choices she contemplated certainly weren’t the business of her rabbi or of the pastor who ran the support group in her community.
Less than a year into her disability, Arlene made a decision. Unwilling to face a life without hands that worked or feet that walked, she decided to starve herself to death. Her husband stood with her and her decision. “She was set in her ways, and that’s the way she’s always been. And she was not depressed,” her husband said.
I knew Arlene’s disability was not a terminal illness and that she was far from death’s door. She was, like me, disabled, and her decision was a deliberate suicide. Knowing about the physical pain that accompanies starvation, I sent her a letter.
“Maybe our situations aren’t exactly the same,” I wrote, “but I can understand the loneliness, the confusion, the battle with resentment, and the many questions.”
As a fellow person with disabilities, I pleaded with her to reconsider. But Arlene died not long after she received my letter.
I talked with Phil on the phone after his wife’s death. “Do you wish Arlene would have waited a little longer before she decided to kill herself?” I asked.
There was silence on the other end, and then a tentative “Yes. Yes. I think about it all the time.” Then Phil was quick to add, “But it wasn’t my choice to stop her. In fact, all of us, the whole family, supported her.”
Arlene’s death was her own business. That’s what she believed anyway. And even though pain management and provisions for independent living are better than ever for people with disabilities, things like customized wheelchairs, special-order beds, attendant care, adapted home environments, and financial aid are, to some people, window dressing. The hard-boiled truth is that they just don’t want to live with a severe disabling condition, and they believe the decision to die belongs to them alone.
I can’t help but picture Arlene’s life before her accident. It’s easy to imagine her climbing the cliffs of Big Sur, blazing a trail into the wilderness, or powering ahead on her bicycle, leaving the pack in the dust. And in a way, her choice to die fit her do-it-yourself profile. After all, Arlene was obviously a first-class individual, a born-and-bred American who held on to her individualism tightly as a highly prized value. Her brand of private initiative found its logical and ultimate expression in her decision to die. And in our society, which regards individualism as a valued trait, Arlene’s choice seems common, acceptable, and not surprising.
But was Arlene’s demise her business and hers alone? To make a decision before life involuntarily leaves us is a decision we do have the power to make. But is it a decision we should make? Can it possibly be the best decision for us when it hurts those around us—even if, like Arlene’s husband, Phil—they support the decision?
When Is It Right to Die? “When It’s Too Expensive to Live.”
“Hey, for a lot of people death is just plain cheaper than life!”
I never would have dreamed that this would be the perspective on the minds of most people at a banquet attended by Christian health care professionals. I was invited to present the main address, and the topic was “Assisted Suicide in the Disability Community.” During the Q&A time, the concern turned to rising health care costs. One doctor shook his head and said, “Costs for treatment are soaring beyond what anyone can handle.” He tapped his fingers on the table and added, “I think this whole life and death debate is going to be settled by economics.”
I shivered. I thought of the subtle pressure that society places on dying, terminally ill, or medically complex people, reminding them that expensive treatment does, after all, have its limits. An example? The Prioritized List of Health Services is used to determine which medical services will be covered by Oregon’s state health plan (Medicare/Medicaid). When the program began in the early 1990s, 745 possible categories of treatment were available to enrollees. Ten years ago, the number of covered services had dropped to 503 out of a total of 680 categories of treatment listed. As of January 2017, only 475 of 665 categories are covered.
Are we to the point where health care costs and arguments over insurance coverage have forced us to put a different price tag on each person’s life? What about those who are the most economically vulnerable? A decision to forgo treatment and hasten a quick death may be one of a few options for wealthy or well-insured persons, but it could be the only option for people who are poor, abandoned, or severely disabled. More than 60 percent of reported deaths under Oregon’s Death with Dignity Act in 2015 were individuals on Medicare, Medicaid, or another governmental insurance.
When Is It Right to Die? “When Death Is Easier Than Facing Life.”
There’s a time when life is the foe, and death is the friend—that’s what Ken Bergstedt came to believe.
A black mustache and beard. A black shirt. Black trousers, shoes, and socks. That was the first thing I noticed about Ken when his father wheeled him into my office. But our conversation was surprisingly lighthearted. While his father sat on the office sofa, Ken and I gabbed about our disabilities, how irked we were with wheelchair manufacturers that kept hiking prices, and how it was a good idea to always double-rinse the sheepskins we slept on. Our one-hour appointment passed quickly. Ken and his dad returned to their RV, and a day later headed back to their home in Las Vegas.
After Ken left, I mused over our similarities and differences. We were old veterans when it came to our disabilities, but we were quite different when it came to our faith. My limitations had forged a stronger faith. His limitations had drained him of any spiritual notions. But I was grateful he kept in touch. I received a letter a couple of months later in which Ken included a few photos of how his dad had modified their RV for his wheelchair.
A year later, I read about Ken in the news. The article was cut-and-dried, explaining that Kenneth Bergstedt, a ventilator-dependent Nevada man, now wished his father to assist him in suicide. Ken’s decision was exacerbated by the fear that his dad would soon pass away due to failing health. Both were afraid that Ken would not be adequately cared for once his dad died.
It was virtually impossible to get through to Ken once the news media got involved. Nevertheless, I tried to contact him, writing, “Is it true you said in an article that you have ‘no happy or encouraging expectations to look for from life,’ and you ‘live with constant fears and apprehensions’? Those words are chilling—they remind me of a time when I said the same. But don’t have them pull you off the ventilator.”
I don’t think my letter ever reached him. And from reading further accounts in the news, it was clear why Ken wanted his father to kill him. Life seemed more frightening than death.
Four months later I picked up the morning paper and saw a small notice on the bottom of the front page. Ken had died. His father died, just a short time later.
The prospect of life without the familiarity of his dad’s care was unbearable. Death, to Ken, appeared to be more of a friend than the known hell of life. The irony is, life without his father was yet to be lived, and it didn’t have to be hellish. I personally knew of people in his community who wanted to help him interpret the future as a friend. But Ken refused. What he knew of life appeared more ominous than what he knew of death.
When Is It Right to Die? “When Death Is a Matter of Mercy.”
Isaac Asimov once wrote, “No decent human being would allow an animal to suffer without putting it out of its misery. It is only to human beings that human beings are so cruel as to allow them to live on in pain, in hopelessness, in living death, without moving a muscle to help them.”
A long time ago, I went to see a movie with my friends called They Shoot Horses, Don’t They? I had just been discharged from the rehab center, and my friends thought it would be nice to enjoy some Friday night fun. Besides, the title had “horses” in it, so the movie couldn’t be that bad, right?
Wrong. It was a story about a depressed person who wanted a friend to put a gun to her head to relieve her suffering. When the friend protested, the character, played by Jane Fonda, said with woeful eyes, “They shoot horses, don’t they?” At that point we left the movie.
Art sometimes imitates life, and although the message of that movie may have been shocking when it was released in 1969, today 67 percent of Americans and 38 percent of evangelical Christians approve, in certain cases, of mercy killing.
But what induces a person to cause a death and say, “This is for your own good”? Is it indeed because pain is excessive? Pain management is the most sophisticated and advanced it’s ever been. Is it the difficulty of living with limitations? Who knows what Arlene could have accomplished in the world of wheelchair sports if she had given her wheelchair half a chance. Is it a suffering loved one’s shattered dignity and loss of hope? Are we motivated to mercy-kill because the loved one is hurting, or are we motivated by a confused sense of guilt and sympathy, suffering as we watch him or her? The key is, nobody (not even me) wants to be disabled. But once you experience that accident, once you are disabled, you may quickly change your mind about what makes life worth living. Life is that precious.
And no matter how forcibly Isaac Asimov or moviemakers may argue, animals aren’t on the same level as humans. As Charles Colson explains, “Humans are unique in all of creation: we are conscious of our existence, aware of death, capable of works of great creativity, and the only part of creation that bears the image of God. Humans alone have eternal souls, which confers unique moral status.” That’s why putting down an injured horse is worlds away from killing a suffering person.
The dictionary defines mercy as “kind or compassionate treatment.” And there are much better ways to demonstrate kindness and compassion than to send a loved one off into an irreversible death.
Defining the Right to Die
Just listen to a few people respond to the question “When is it right to die?” and you’ll hear a mixed muddle of not only when, but who wants to die, how, and why! Of the people whose stories I shared above, no one was actually dying. Yet whether the person is dying, disabled, or terminally ill—or is the family member of one of these—all use similar language and arguments. To clear up the confusion, let’s look at a few terms.
EUTHANASIA
Euthanasia is supposed to signify “good death,” but today’s meaning of the word is confusing because it conjures up images of everything from pulling the plug on a dying loved one to the killing of millions in Nazi Germany who were considered socially unuseful—useless eaters.
Practically speaking, euthanasia means to “bring about death” or “assist an individual in achieving death” because others, or even the patients themselves, consider their lives to be worthless. The motive is usually to relieve suffering, save money, or do away with the indignities associated with dying. Dr. C. Everett Koop, who served as US Surgeon General from 1982 to 1989, explained euthanasia this way:
The whole thing about euthanasia comes down to one word: motive. If your motive is to alleviate suffering while a patient is going through the throes of dying, and you are using medication that alleviates suffering, even though it might shorten his life by a few hours, that is not euthanasia. But if you are giving him a drug intended to shorten his life, then your motivation is for euthanasia.
In some cases, euthanasia has come to mean the deliberate act of causing the death of another person, commonly through lethal injection. There used to be a distinction between active euthanasia—mercy killing by which a person takes action to cause someone else’s death—and passive euthanasia—mercy killing by withholding or withdrawing medical treatment or food and water. Now, however, all euthanasia is seen to be active, and the phrase “forgoing life-sustaining treatment” has taken the place of the term “passive euthanasia” in most cases.
Voluntary euthanasia is to cause death with the person’s approval and consent; nonvoluntary euthanasia is to cause death without a person’s consent through approval secured from a family member, hospital panel, or court. The key is that the patient is incompetent, and someone else must decide either what the patient would have wanted or what is in his or her best interests.
Involuntary euthanasia is to cause the death of a person against his or her will under whatever circumstances. Death selection involves systematic involuntary euthanasia against the lives of people no longer considered socially useful. This type of euthanasia threatens a wide range of people, including the elderly, the habitually criminal, those who are mentally ill, and those with disabilities. Population control and cost containment are two primary arguments used when the subject is debated. Currently no groups are officially proposing death selection, but practically speaking, we see this happening with babies diagnosed with Down syndrome in the womb. Women who have this diagnosis confirmed through amniocentesis choose to abort their baby 90 percent of the time.
Assisted suicide is a term that describes a physician or family member aiding a person toward death. It can also be called medically assisted death or aid-in-dying.
DEATH WITH DIGNITY
Death with dignity is a phrase that tries to say one thing but ends up meaning another. After all, death is the final indignity of losing all that one possesses in life. Death remains, in the words of the apostle Paul in 1 Corinthians 15:26, “the last enemy.” People may die serenely or peaceably, but with dignity? Modern usage of the phrase implies that death by suicide or homicide is inherently preferable to death by natural causes. Some say the dignity comes from the choosing, the being in control. Journalist Jason Barber writes, “Death with dignity is a human right: to retain control until the very end and, if the quality of your life is too poor, to decide to end your suffering; the dignity comes from exercising the choice.” Other euthanasia proponents explain that death with dignity means allowing a person to die free from the dehumanization and pain often brought about by the application of extraordinary medical efforts in the cold sterility of hospital wards.
Currently no laws require a dying person to be kept alive by heroic measures. Also, all mentally competent persons have the legal right to refuse medical treatment, provided they have received sufficient information from the physician to make an informed consent. What’s more, with an advance health care directive (discussed further in chapter 9), a person can make their wishes regarding medical treatment known before an accident or illness incapacitates them—and there are laws in many states that require doctors to abide by these directives.
RIGHT TO DIE
Right to die is another phrase that tries to say one thing but ends up meaning another. Taken literally, “right to die” is senseless. There’s no such thing as a right to something unavoidable and inevitable. No one speaks of having a “right to jail time” after being convicted of a felony. But in common usage, the phrase sometimes means the “right to choose one’s own kind of death” and at other times a supposed “right to be killed.”
QUALITY OF LIFE
Quality of life is a phrase of recent phenomenon. A hundred years ago, people like me who broke their necks died—no need to worry about quality of life when you’re dead.
Today it’s a different story. Within the last several decades, medical technology has given us high-tech helps to improve a person’s so-called quality of life. And this has granted society the power to control whether a person lives or dies, all depending on the application of a few technological marvels or complex drugs. For example, an air-pulse generator and inflatable vest used by my friend Veronica vibrates her airway walls in a therapy called high-frequency chest wall oscillation to counteract the effects of cystic fibrosis on her lungs. A sophisticated drug regimen stabilizes the moods of my neighbor Linda, who struggles with bipolar disorder. Or on a much simpler level, an indwelling catheter keeps the urinary plumbing of someone like me flowing.
Kidney machines, pacemakers, insulin injections, and medications to manage either pain or depression—all of these things, to one degree or another, increase one’s “quality of life.”
However, by virtue of these high-tech tools or drug therapies, people’s lives begin to be defined by whether or not they can function. Don, thanks to a ventilator, is able to sit up in a wheelchair and go about life as a “normal” person. People like Lisa in pain or depression can, with medication, hold down a job and raise a family. They can function, and thus society moves them up a few notches on its quality-of-life scale, a few notches above others less able—such as my friends Paige and Tyson Snedeker, who were both born with a neuromuscular degenerative condition that has slowly taken their ability to move, see, hear, and even breathe on their own.
Some say a society that measures people in terms of quality of life will preserve those who have a potential to function . . . and will neglect those who don’t. Oddly enough, society will ascribe to physically fit and intellectually capable people a very high quality of life, despite the fact that they are sometimes the most miserable, and a very low quality of life to people who are poor and disabled, despite the fact they are sometimes the most content. “Quality of life” is generally used as a counterbalance to the term sanctity of life. Which brings me to the next terms.
ABSOLUTE AND RELATIVE VALUE
Absolute value reflects the long-held ethic that human life holds complete worth without relationship to other factors, including a person’s functioning ability. In other words, no matter how disabled Paige and Tyson become as a result of their degenerative condition, their lives will never lose value.
Relative value is what people ascribe to human life when it is appraised in relation to other factors, such as how much a person can or cannot do. By this definition, the value and meaning of Paige’s or Tyson’s life are related to how disabled they become.
From varying viewpoints, life has either absolute or relative value. Which is it? And how do those viewpoints have a bearing on preserving or rejecting the life of a warm-blooded, breathing human being like my friend Nancy Severns? Nancy has a connective tissue disorder, Lyme disease, and a host of other diagnoses that keep her in bed for all but a few minutes each day. She has been bedridden for nineteen months on account of pain and fatigue. Lying flat and faceup, she can’t be too far above the bottom rung of society’s quality-of-life ladder.
People’s Viewpoints . . . Society’s Trends
When? Who? What? How? Why? You know the issue is confusing when you have to get so nitpicky about definitions. And although dictionary terms make the life and death struggle sound neat and clean, it is not. Death is the great indignity, the last enemy, and we should be shocked by the stories of people like Arlene Randolph and Ken Bergstedt. But why aren’t we?
Euthanasia is not uncommon. It has been closeted in hospital ethics committees as death certificates are divvied out, and cloaked in back rooms of maternity wards, where infants with severe disabilities have been left to starve to death.
On the one hand, it’s good to yank euthanasia out into the open and expose it to public debate because people need to understand and be able to make informed decisions. On the other hand, the sheer repetition of stories like Arlene’s and Ken’s gradually dulls the shock effect. No longer is the public outraged by the starvation of infants born after botched abortions or the murder-suicides of caregivers solving the problem of their loved one’s ongoing care through death. Instead, where there was once repulsion at the actions of the Dr. Kevorkian types, who made it possible for any despairing individual to orchestrate their own suicide, and revulsion at the methods for euthanasia involving the extremes of bullets, suffocation, or poisoning, much of the debate has now shifted to an acceptance of the premise of euthanasia but with differing opinions about the best means to achieve it.
In the last few decades, though no one can say exactly how it happened, the unthinkable became tolerable. And then acceptable. And then legal. And now, God help us, applaudable.
For centuries, civilized countries, through law and religion, safeguarded life, especially the lives of those who are weak and vulnerable. Increasingly, that is no longer the case. Instead, when a person who is disabled, elderly, or terminally ill wishes to end their life, it is considered courageous. When a person who is not in these categories wishes to do the same, it is considered suicide, and the individual receives treatment to help them overcome those desires. And what an irony that euthanasia has become popular at a time when our resources are boundlessly greater and our medical capabilities infinitely better than they were in the days when mercy killing was anathema.
But now, in the midst of greater resources and greater potential, we struggle to match our discussion of ethics with rapidly advancing medical technology. The passion to safeguard and exercise rights has resulted in sloppy definitions and unpardonable legislation. When it is no longer convenient to care for a person with disabilities, shouldn’t the role of the state be to protect the weak and vulnerable and not to support their execution? It is the hallowed responsibility of government to safeguard the well-being of the weak and vulnerable, not to prematurely end their lives. Sadly, it has now become appropriate to kill a person because it’s too hard and too emotionally distressing to keep them alive.
Influencers are proposing answers to the question of what is moral in relation to end-of-life decisions, and society, whether deliberately or unintentionally, is forming answers as well.
Now, what is your point of view?
Questions for Discussion and Reflection
Let’s Define the Issues
People are defining the issues around the question “When is it right to die?” on a daily basis. A good working knowledge of the issues will help you be a better decision maker and also enable the church to speak to our society at large.
Consider the following answers to the question “When is it right to die?”
• “It’s none of your business.”
• “When it’s too expensive to live.”
• “When death is easier than facing life.”
• “When death is a matter of mercy.”
What would you say to those who give the above answers? Remember, these people aren’t saying these things for the sake of academic discussion. They are in severe pain and/or despair.