Making Decisions about the Rest of Life

People who are facing death begin gradually to make decisions about the rest of their lives. They look inside themselves for reference points, for what is important to them: Which people mean the most to me? What kinds of things should I be involved in? Where should I live? They also find outside references: people, poetry, spirituality, support groups, mu­sic, books.

Some people begin by summing up their lives. Part of what Dean called his preparation for death was to look at what he had accom­plished and decide what his legacy would be. Dean runs a small news­paper, and he is arranging for the smooth transfer of the business to his partners. He also thinks of the paper as his legacy: “I have to have some­thing that says, ‘Dean was here.’ I’d like people to read today’s newspa­per in fifty years and say, ‘Oh that’s what it was like then.’ My paper is going to go on, and people after me are going to benefit from it.” Lisa’s husband began talking more about an earlier marriage that had ended in divorce, how sad he was that the family hadn’t been able to stay to­gether, and for the first time in twenty years, he invited all his children to come home at the same time.

Some people decide to do the things they have always wanted to do. Dean had always wanted a personal computer with which to keep track of household expenses and could never justify the cost; finally he bought one. A friend of Dean’s decided he wanted to travel because he never had. He arranged his trip, arranged his sources of medical care and med­icine, sold his house, and took off.

People often want to resolve relationships. They work hard to get on more comfortable terms with their parents, children, brothers and sisters, spouses, friends.

Often the person with HIV infection makes the first step toward res­olution. Some people who are approached for this purpose do not react positively. Resolving a relationship with a dying person means admitting death’s inevitability, and some people are intimidated by the thought of death. Sometimes they only want time to get used to the idea, and they react more positively when they are approached again a little later. In general, people with HIV infection and the people they talk to both want the same things. They want to reminisce and think about what good times they had. They both want to know they’re loved; they want to be accepted for who they are. They want to feel comfort and warmth in each other’s company. People who are dying also want reassurance that the people they love will be watched over and cared for.

Some people decide what should happen to their property. Helen said, “Finally I sat down and decided who was getting what, and wrote it down. I considered giving stuff to the people that most hated it. Then I decided not to do that.” Some people decide they are uninterested in having a say about the disposal of their property, so they don’t bother with it.

Some people consider suicide. Thoughts of suicide most commonly occur early in the course of the disease. People often devise concrete plans: at what point they will decide to end their lives, what method they will use, how they will keep the burden of guilt off their survivors. Men­tal health professionals recommend that people talk to a professional about their decision, then give it a while before doing anything.

Some people who are dying and their caregivers want to know what to anticipate clinically. They find that knowing what their bodies might do and what the treatment will be takes the mystery out of the process. They say that the more they know, the less they invent to worry about. For these people, a book called How We Die, by Sherwin Nuland, might be helpful. Other people do not want to know, and would like to dis­tance themselves a little from the physical aspects of being sick and dy­ing. Still others want to know a little at a time. Learn the facts only if you want, and only when you want to.

Often people decide under what conditions they would like to be al­lowed to die. Some refuse medication or procedures they think would prolong a life that has become distressing. A friend of Dean’s who had become blind, deaf, and incontinent refused transfusions and drugs with painful side effects that might prolong his life, and accepted only pain­relieving medication. Dean’s friend saw this not as giving up but as mak­ing his last days comfortable. Others refuse life support systems. Lisa spent nights at the hospital with her husband toward the end of his life. He refused the respirator, so Lisa brought him home. He lived ten days, then died as he had wished, at home. Like Lisa’s husband, many people would like to die where they feel a sense of control and privacy, in their own beds. Many others feel their homes should remain a place of life and would rather die in a hospital or hospice. And some people do not want to choose beforehand but simply wait and see how they feel at the end.

Some people who are dying make funeral arrangements with the help of their caregivers. Some want to make sure their caregivers find a funeral home that won’t refuse to offer services because of AIDS. Oth­ers want to give their caregivers some moral support. “I asked my part­ner his opinion on a cemetery plot,” said Dean. “The reason is, once when I had to go away for six months, he was very upset. I helped him through that by doing everything—my planning and packing—with him. That’s what I’m doing now, helping him by doing everything with him.”