The patient expired.”
I’ll never forget the first time I heard those words. I couldn’t have been much more than six years old when Aunt Hattie . . . expired. Aunt Hattie was not in fact my aunt or any relation at all. She was simply an elderly woman my grandparents had taken under their wing. She lived a couple of blocks away from their home and they would look in on her, take her to medical appointments, help her buy groceries and so on.
Although I’d met her several times, we were not close. The news of her death didn’t traumatise me. But the word expired stuck with me. Before that day, I’d thought that “expired” meant time had run out on your parking meter. I said as much and someone, my mother, I think, explained that “expire” meant, in Aunt Hattie’s case, to breathe out: Aunt Hattie had expired, had breathed out and never breathed in again. She had died.
The 1950s were a simpler time. When people breathed their last, that was it. Aunt Hattie breathed her last in her own bed, unencumbered with IV lines and medical machinery. At the time, it was unremarkable. But it would not long be that way.
About the same time, the polio epidemic ravaged much of the advanced world. For many today, that outbreak seems as remote as the Black Death of the Middle Ages. But for those of my generation, it was real and it was always near. Children my own age died or were so terribly paralysed they couldn’t breathe for themselves and lived only with the aid of a machine called an “iron lung.” I’d never heard about a machine that could breathe for those who could no longer breathe for themselves. They’d “breathed their last” but the machine kept breathing for them. For the first time I became aware of the possibility of “pulling the plug,” of turning off a life-sustaining machine, resulting in death.
In the decades since then, machines have taken on ever greater roles and functions. The old iron lung substituted for the patient’s diaphragm, drawing air into and forcing it out of the lungs. Today a heart-lung bypass machine can take your blood, infuse it with oxygen and pump it throughout your body while surgeons operate on your heart. A dialysis machine can substitute for your kidneys, filtering impurities out of your blood. Both of these are temporary. But a pacemaker can be implanted in your body to keep your heart beating regularly. And these only scratch the surface. It seems that doctors are finding more new ways to extend life every year. That surely sounds like good news. Extending life solves certain problems, but it introduces others. This situation touched my life directly.
My mother, still vigorous and active as she neared her eightieth birthday, was diagnosed with breast cancer. Doctors operated and were successful in removing the cancer, but mother suffered a series of small strokes following surgery. She gradually lost the power to speak and eventually even to feed herself.
During one period when she was unconscious, doctors asked her husband whether they should insert a feeding tube. If they did not, she would die. My father had lost one wife and he said he couldn’t face losing another, so he directed that the feeding tube be inserted.
What followed was a nightmare. Mother suffered more small strokes and continued to lose her ability to communicate and function. Much of the time she slept, but when she awoke, she tore at the various tubes attached to her body. She clearly wanted an end to her suffering. Her husband died, but she lived on. Her heart kept beating, her lungs kept filling with air, but she could only whimper her loneliness and despair. But until she was brain dead, no-one could remove the feeding tube. She spent nine years like this, until she died early on Christmas Day, 2003.
I relate this not to blame her husband, for surely he meant her no ill. I share it to highlight the difficulties that technology brings to end-of-life issues.
And my mother’s situation was by no means a uniquely difficult case. Today, physicians and loved ones face daunting ethical questions concerning when and whether to “pull the plug.” We humans are neither wise enough nor virtuous enough to know when another’s life should end, but increasingly we face that decision.
In addition to prolonging the lives of the chronically ill, doctors have become quite skilled at bringing people back from the brink of death by stimulating the heart to beat and the lungs to breathe after some trauma has stilled them. But is that always desirable? Some conditions are neither reversible nor treatable. For example, patients with advanced Lou Gehrig’s disease might choose not to be resuscitated should they suffer cardiac arrest. Such people might sign a “Do Not Resuscitate” form. This tells the hospital staff not to perform CPR on them.
We never know when these questions might arise. A few weeks before I wrote this, the car I was driving suddenly spun out of control into a ditch. I hit nothing and was not injured. But I could just as easily have collided with an oncoming vehicle or slammed into a tree and ended up being put on life-sustaining machinery until relatives could be summoned.
Questions to ask
Those facing the difficult decision of whether to discontinue life support for a loved one may find it helpful to reflect on the following five questions:
1. Is the patient dead? Medically the answer is pretty simple; emotionally it isn’t so easy. Medically, the answer lies in the brain. If the brain is dead, the patient is dead, even though life-support machinery may be keeping the body breathing and pumping blood. And this is the difficulty families face when confronting such a situation. According to bioethicist Arthur Caplan, when a patient is on life support, the loved ones hear “ ‘kind of dead’ . . . ‘sort of dead,’ but they don’t hear [the word] ‘dead.’ ” For this reason, instead of calling it “life support,” critical care specialist Isaac Tawil, of the University of New Mexico School of Medicine, prefers to call it “organ support.” In other words, the person has died, but the organs are being kept alive. In such a case, “pulling the plug” neither initiates nor speeds up death. It simply allows the body to continue what it has already begun to do. But that can be difficult to remember when you’re the one asked whether to pull the plug.
Some may ask about miracles. Can’t God perform miracles? Ronald Oliver, system vice president of Mission and Outreach at Norton HealthCare in Louisville, Kentucky, tells of the case of a child who was declared brain dead, but the mother went to court to block removal of life support. Her minister served as her “expert” witness, saying that “even if the child is brain dead, we can still hope for a miracle.”
2. Is recovery possible? There are some situations where no medical intervention can reverse the damage to vital organs. No matter what is done, the patient will worsen and die. My mother was in such a condition. She could no longer swallow. A feeding tube could keep her nourished and hydrated, but she would never be able to live on her own again.
3. Is the decision reversible? This applies mainly to providing life-sustaining services. In many states, once a feeding tube is inserted, it cannot be removed until death comes by some other cause than malnourishment. And there may be other complications.
A young woman in Texas, US, was declared brain dead by her physician and the family wanted life support removed. However, because she was pregnant, the hospital had to abide by state law and keep her on life support until her child was born.
4. Is the patient suffering? Many patients on life support are in deep comas, a twilight state where they experience neither pleasure nor pain. But there are some conditions where they are conscious, again like my mother, and suffering severe loneliness and isolation because they can’t communicate, or in the case of some cancer patients, they may experience increasing pain in spite of the use of drugs intended to ease it. In such cases, “pulling the plug” may be the most humane alternative.
Let there be no mistake: this is not about euthanasia or the so-called “doctor-assisted suicide.” I’m not talking about actively hastening death. I’m talking about uselessly prolonging it.
5. Who is this about? This may seem like a question with an obvious answer: this is about the patient. But, in fact, this is one of the questions that most commonly gets confused. Remember, my mother’s husband unknowingly revealed the answer himself. He had lost one wife and he couldn’t bear to lose another. In other words, it was about his feelings of grief and loss. The survivors’ grief and fear often influence the decision of when to end life support.
John Skanse, a chaplain at Philadelphia’s Einstein Medical Center, described the case of a man for whom a machine had taken over for his failed heart. Skanse said that “doctors knew he would not survive a transplant. Death was certain eventually. But his wife was unwilling to make a choice about withdrawing care; the doctors asked her many times, but she was afraid the rest of the family would blame her.”
And leaving the decision up to doctors doesn’t eliminate the problem. Intensive care units have their own pressures. An NBC web article on ICU culture stated that “in the absence of instructions from the patient or their family members, it’s the culture of the ICU which is more likely to sway the decision about whether to prolong care—or not.”
Whether it’s avoiding more grief, fearing blame or simply being influenced by the culture, these examples focus on someone or something other than the patient.
Prepare ahead of time
All of this points to the importance of making out a living will—a legal document that tells loved ones and caregivers what you want done in a situation where you’re on life support but unconscious or otherwise unable to communicate your wishes.
At the very least, it’s wise to discuss these matters with family and loved ones so that if such a situ-ation should arise, they’ll have a clear understanding of your wishes. That’s what I plan to do. I don’t want to needlessly add to the grief that those left behind will feel when I’ve breathed my last.
We don’t have the power to give life, so we must be very careful in choosing to end it. End-of-life issues expose the difference between knowledge and wisdom; between capability (we can) and morality (we ought or ought not). Advances in medical technology and therapy confront us with daunting moral dilemmas and terrible temptations.
First, we must distinguish between, on the one hand, actively terminating life (assisted suicide) and, on the other hand, choosing to refrain from the use of life sustaining devices or removing them once they’ve been started. And then we must recognise the forms temptation takes.
For medical personnel, the ability to prolong bodily functions tempts them to fight to keep the patient alive, not for the patient’s good, but to avoid feelings of failure.
Loved ones may be tempted to continue useless life support to avoid facing their own grief or because they want to avoid blame. And everyone involved can be tempted to simply be done with it, to make one final decision, so they don’t have to face any more difficult choices.
Our duty is to prayerfully consider the alternatives and choose what we believe is best, not for ourselves, but for the one who’s dying. We do what we can while recognising that we don’t know the end from the beginning. Only God does.