Emotional Responses to Death
Elisabeth Kubler-Ross is a psychiatrist who wrote the standard book on how all people, regardless of the causes of their deaths, respond emotionally to the fact that they are dying.
After interviewing people who were dying, she found they have several responses in common. One is disbelief and denial that death could happen to them: as Dean Lombard said, “You feel it’s not going to happen, though you know it is. You feel emotionless because it can’t be real.” Another is anger at having been singled out. Another is an impulse to bargain, to push back the inevitable and gain a little time: “I don’t think we ever feel as though it’s all complete,” Steven said, “as though the world owes us nothing else.” The next is depression: the loss, pain, and sorrow that come from recognition that death is inescapable. The last is acceptance, coming to terms with death: “The meaning of the diagnosis finally hit me,” said Dean. “I might not be here forever. I should make my preparations for death.”Kubler-Ross said the responses to death occurred in stages: first denial, then anger, bargaining, depression, and finally, acceptance. Later, she and subsequent researchers amended the idea, saying that perhaps the word stages is misleading. Not everyone has all these responses, or has them in this order. Some have several at once. For others, the responses alternate: anger, then depression, then anger again. And not only the people who are facing death, but also their caregivers, have these responses. Caregivers share the same feelings of denial, anger, depression, bargaining, and acceptance, both on behalf of the people they are taking care of and for themselves.
To anyone who has learned to live with a diagnosis of HIV infection, these responses come as no surprise. They are nearly the same emotions people experience when they learn of their diagnosis of HIV infection.
These emotions are also the same as the normal responses to living with HIV infection. Perhaps this means that people with HIV infection have been facing death since the moment of their diagnosis; perhaps it means only that these are the responses people have when faced with any catastrophe.In any case, the responses to the diagnosis serve as a rehearsal for the thought of death. People who have had these responses before are a little used to them, and know a little about how to handle them. The same strategies—strategies for refusing to fret about what will not change, for finding harmless or even helpful ways of discharging anger, for turning despair into some sort of hope for something or someone, for facing down fears, for distracting yourself with pleasure, for accepting yourself with fondness and your condition without self-hatred, guilt, or blame still work, even against death.
People have other natural responses to the thought of death. One is fear. People are afraid of dying in pain. They fear the moment when life stops. The truth is that dying—the process that leads to the moment of death—sometimes does hurt, but doctors have medications to block the pain.
Death itself seems not to hurt. The body, either quietly or quickly, stops working. No one knows much about the moment of death, but it does seem that a built-in mechanism protects people from physical and psychological pain. As a rule, death comes peacefully.
Most of our fears about death are actually about what will happen before death. This fear is universal; the sixteenth-century French philosopher Michel de Montaigne wrote about it in his Essays: “It is not against death that we prepare ourselves...................... To tell the truth, we prepare
ourselves against the preparations for death......... It is certain that to most
people preparation for death has given more torment than the dying.” Montaigne goes on to offer a sort of rough comfort: “If you don’t know how to die, don’t worry; Nature will tell you what to do on the spot, fully and adequately.
She will do this job perfectly for you; don’t bother your head about it.”Specifically, people are afraid that while they are dying they will be abandoned. They are afraid of being alone at such a difficult time. They fear they will lose control. They worry that they have been bad and deserve death. They fear physical pain and disfigurement. They worry about the people they will leave, about the relationships left unresolved and business left unfinished.
Another natural reaction to death is confusion. The thought of life ending is new territory, and people are unsure how to think about it or what to do about it. What does it mean to be dying, but alive at the same time? “I don’t know how to just let life go on until death comes,” Helen Parks said. “I’m between this pole and that pole.”
Still another natural reaction is a sense of loss. Through sickness, people lose the bodies they were accustomed to. They lose their abilities to do what they were good at, their competencies. They lose the healthy, active lives they shared with their friends, and to that extent, they lose a commonality with their friends. And because they are aware of dying, they lose their sense of a future, the feeling that limitless time is available to them. Accepting these losses brings anguish.
Some of the anguish in accepting losses comes from knowing that smaller losses are tokens of greater ones, of the loss of life and the entire world. Some is because losing the future also means losing the idealistic, hopeful part of you, your potential, the person you might have become. And some of the anguish is because people want so much to live. “The will to live is so great, you can’t even think about it,” said Dean. “You feel as though you could beat anything just by wanting to live.” The anguish people feel over losing life is in proportion to the intensity with which they want to live. “The inevitability of death has the effect of making you appreciate life more,” said Edward Carroll.
“The irony is, appreciate it or not, someday it will be taken away from you. There is a lot of sadness with this. Sadness at leaving people. Sadness at not being able to see the rest of the world.”People facing death also want to settle existential questions about life: What is being human all about? Do I believe in God? What will happen to the world after I die? What will happen to me after I die? They turn to religion or spirituality or philosophy, and they think about the same questions people have been asking for centuries. Lisa’s husband was not unusual in becoming religious before he died, reading the Bible and writing his thoughts in a journal. Edward had similar impulses: “If there’s a God and if there’s a Judgment Day, as I believe there might be,” he said, “you want to face that knowing that your life hasn’t been wasted. I do think we’re put on this earth to work and be productive. One of the reasons I’ve worked so hard over the last eight or ten years is so I could look back and say I’d got something done. I’d like to think that what I’ve done has been useful to other people, that maybe if I haven’t accomplished what I set out to, that at least I got well on the way.”
For all the feelings and worries that dying people have in common, their progress through these feelings and worries is individual. People experience these emotions in fits and starts and at their own paces. Sometimes they want to face death, sometimes they do not. Sometimes they want to make plans and see people, sometimes they do not. Sometimes they want to take control and make decisions, sometimes they do not. Sometimes they want to talk about their feelings, sometimes they do not: Lisa’s husband said, “I don’t always want to talk about dying. Sometimes I want to have days when I’m just living.”
Emotional Responses to Death from HIV Infection
Most of the responses to death described above are shared by all people who have time to contemplate dying, regardless of the cause of death.
What makes HIV infection different is death at an early age in the midst of the deaths of many friends. Most people who die of HIV infection are in their thirties. Someone who has HIV infection probably knows many others with the disease.Because they are young, they have worries about dying that older people do not. Young people have less time to get used to death gradually. They are not yet tired of living. They have not slowly come to see themselves as dispensable and mortal. They do not understand what to do about mortality, how to sum up and conclude their lives. “I have to face my own mortality,” said Dean, “which I didn’t expect to face until I was 80.” They look at their relatively short lives and ask questions they are not used to asking. “Usually people ask in their sixties, ‘What have I accomplished?’” Alan said. “Maybe I’m going to have to ask that earlier.” They often feel resentful that they must ask these questions so early, and they feel unready to supply the answers.
They also worry about dying before their parents. They want to be able to help their parents out as their parents age. “Now I’m looking at dying before my parents,” said Dean. “That changes the natural process. It hurts.”
Because people with HIV infection often know others who are dying of the disease, they have concrete images of what will happen to them. They visit their friends in the hospital and think, “Is this what will happen to me? Is this what I will look like? Is this what I will feel?” “I know what the last few months are,” said Alan, “and I wish I hadn’t seen the suffering. Knowing what it looks like is difficult.” Dean lost twenty friends in two years. “It gets stronger with each one,” he said. “Closer to home.” People with HIV infection say too much death surrounds them. “I have so many friends who are disappearing,” Steven said. “In one year, I went to twenty-six funerals. I sit at the funerals and think how wonderful the person was, and how they looked before the end, and how long will it be before I’m there.” For that reason, some, like Steven, no longer go to funerals. Alan said, “I’ve been to forty-seven funerals. That’s my limit.”