we are not the cause of death
One of the reasons we keep going, keep opting for more treatment under the most dire circumstances, is that we feel unduly responsible. We feel that if we reject a particular treatment, we are not simply allowing death to come, we are causing it. This feeling of culpability is yet another obstacle that we need to examine carefully and anticipate.
When Ruth Sullivan fell and broke her hip at age 89, she recovered remarkably well. Within weeks of her surgery, she was up and walking, using her cane for balance, and living back in her apartment with minimal outside help. This came as no surprise to those who knew her. Ruth was always spry and active. She had played golf until she was 87, and had walked two to three miles every day for as long as anyone could remember. But despite her rapid recovery, Ruth was not happy about her less mobile, more dependent state, and her frustration and depression were evident.
About a month after her fall, Ruth was eating lunch in the dining room at her “senior” apartment building when she went into cardiac arrest. She was rushed to the emergency room and a medical team jolted her heart back into action. Although she had a living will saying that she did not want to be on life support, the emergency crew knew nothing about it and would never risk losing a life to ask about such a thing. Their job is to save patients’ lives. They respond to the situation, and they respond urgently.
Ruth was revived and connected to a ventilator and other machines and monitors. During this procedure, which is not just frantic, but brutal, her trachea—the pipe leading from the nose and mouth into the lungs—was punctured and later had to be surgically repaired, and her ability to swallow was impaired. Within weeks she dropped from 122 to 93 pounds. She couldn’t speak because the ventilator blocked her mouth.
Ruth’s niece and namesake, Ruth Sullivan, went to the hospital as soon as she heard what had happened. “When we got there, there were tubes coming out of everywhere,” she recalls. “We thought, ‘Oh my God, this is what she’s always dreaded. I can’t believe we have let this happen to her.’ ”
Two days later, the elder Ruth, still in the I.C.U., began bleeding internally. She needed a transfusion and she needed it fast. At that moment, she was still hooked to life support and was only marginally cognizant. She couldn’t speak and didn’t recognize people. Her niece said she looked wild and afraid. Her family—two nieces and one nephew—had to make a decision quickly. The transfusion procedure was not complicated. They merely had to give her large amounts of blood over the course of several hours through an IV into her arm. But she was old, she had serious heart damage, and she wasn’t going to get much better even with a transfusion. Almost no one at her age and particularly in her health lives more than a year after resuscitation. It was very likely that there would be other problems, more decline, and additional complications. The doctor explained that at this point, the staff could make her comfortable and that without the transfusion death would probably occur within two or three days. Ruth, the niece, remembers that the doctor even hinted that this might be a good time to let her aunt go, but she also made it clear that the decision was up to the family.
“My brother, sister, and I spent so long talking and crying,” Ruth said. “We were trying to separate ourselves and what we wanted—we obviously wanted her to live, we wanted to talk to her again—from what she would want. We were trying to decide, if she were conscious, what she would say. And we knew in our hearts what that was. Definitely. I had had a talk with her just two weeks before and she had said, ‘I want to go. I want to die. I’ve been here too long. I don’t know why I’m still around. All of my friends are gone. I’ve had enough.’ She had told everyone in the family this.”
It was a horrendous decision to have to make. Each minute seemed critical. She could die at any moment. Procrastination would be a decision. A team was standing by, ready to begin the transfusion. The pressure was enormous. The siblings had to choose.
They knew what Aunt Ruth would have wanted. They knew what they should do. And yet, they simply could not do it. They didn’t want to lose her—that was certainly behind their final decision to proceed with more treatment. But beyond that, they were haunted by a feeling that they were not simply allowing death, but causing it. By forgoing the transfusion, they were not simply letting nature take its course or keeping their beloved aunt comfortable; they were murdering her.
“You feel like, if you don’t do it, you’re killing her, taking some sort of determined action to end her life,” Ruth said.
The transfusion was performed. And to illustrate just how complicated these decisions can be, here is what happened to Aunt Ruth: she recovered well enough to leave the hospital and spend Thanksgiving with her nieces and nephew, which was a gift. But shortly after that, she fell and broke her other hip. She developed pneumonia, became delirious, got a bowel infection, became incontinent, got a urinary tract infection, and her legs swelled to enormous proportions from edema. She wasn’t eating. She became dehydrated. Her heart was failing. She was in terrible, terrible pain.
Ruth asked repeatedly to die. But it wasn’t happening. “I should be up there,” she would say. Once she said, “Just take me out and shoot me. I mean it, Ruthie. I’ve had enough.”
Two months later, Ruth died. The week before, she was moved from the hospital into a nursing home, where she refused all medications. Family members spent the weekend by her bedside, talking to her about what she’d meant to them, how they felt about her, and praying with her. Her favorite nurse was with her when she took her final breath.
The point isn’t whether or not Ruth should have had the transfusion, for there is no clearly right answer. The point is that when we are asked to make decisions about care at the end of life, we sometimes opt for continued treatment, despite our better judgment, because we feel like executioners. We don’t want to say good-bye and we can’t help but hope for miracles, but we also feel that if we reject treatment we will be personally responsible for the death of a loved one. This feeling not only hinders our decisions, but haunts us for years to come.
Ruth’s situation was a bit hazy perhaps, for a transfusion is a fairly simple procedure and it was sure to get her over a hump. On the other hand, she was going to die soon one way or another and this was an opportunity for her to slip away easily. In any case, the shadow of culpability was there, affecting the decision, and it exists even when the decisions are more clear-cut. I’ve seen this not only in my research, but in my personal life. My mother felt guilty because she gave my father morphine in his dying days and she thought that his death came sooner because of it. My husband felt responsible because he accepted hospice care for his mother, even though the doctor recommended it and said that further treatment was futile. And a friend, who asked that his name not be used, felt horrible when he decided to remove his mother from life support.
His mother was in her seventies and extremely active and independent when she suddenly had massive bleeding in her brain due to a ruptured aneurysm. After surgeons stopped the bleeding, she lay, unresponsive, hooked to breathing, feeding, and hydrating tubes; heart monitors, oxygen monitors, and the rest, for three months. Finally, her doctor told the family that she would never get off the machines, she would never recover. Her husband and children decided, reluctantly, to take her off the machinery and let her die.
“It’s creepy to be able to control these things,” my friend said in the midst of the ordeal, while he was still contemplating what to do. “The whole thing makes me sick…. I don’t care what anybody says, you are taking actions that will effectively end her life. We were causing her death.”
He is right. No one should have to make such a decision. But we do. The vast majority of deaths today occur after such decisions are made. And the more medicine offers us, the more common and the more difficult these decisions will become.
But my friend is also wrong. He and his family did not cause his mother’s death. And this is where we have to start making changes, in our attitudes and understanding about what death is and how it occurs and what role we play in it. People should feel an enormous sense of responsibility, for these are major decisions, but they should not feel personally responsible for death itself; they should feel only responsible for finding a way toward the most humane death. We have to get away from our guilt-ridden mind-set, and to see all these issues in a different light.
We should start with our language. We talk about “giving up” and “letting go.” We talk about cases being “hopeless” and about “pulling the plug.” We talk about “futility” and about “ending treatment.” We talk about “doing everything” versus “doing nothing.” We talk about “aggressive care,” which suggests that the alternative is less aggressive, or perhaps not “care” at all.
When we take a terminally ill patient off life support, we are not “pulling the plug,” we are “freeing” the patient to die. We are “releasing” her from excessive technology and invasive treatments. When we allow death to happen, we are not killing people, we are caring for them. We are loving them. We are respecting nature and all that life and death are about. We are taking them from medicine’s iron grip, swaddling them in our arms, kissing their ashen cheeks, and, as we summon all of our strength, giving them the most generous gift of all: we are letting them go. This is not an act of murder. It is an act of love.