Leonardo da Vinci once said, "While I thought I was learning how to live, I have been learning how to die." While many people die unexpectedly with no clue that the end is coming, metastatic cancer patients and those with other terminal diseases often do have the opportunity to prepare for the end. And how they deal may determine whether they go agonizingly or gently into the night.
Elizabeth Edwards, wife of former presidential candidate John Edwards, has been dealing with breast cancer that has spread to her bones by writing a new book called Resilience. (Here's her interview with U.S. News.) Carnegie Mellon professor Randy Pausch gave his famous last lecture, which became popular on YouTube and was expanded into a book. "Several studies suggest that one way people cope with terminal cancer is by engaging in life projects that enhance connections with their loved ones and help them prepare to die in peace," says Joshua Fogel, an associate professor of behavioral science at Brooklyn College in New York.
How people respond to a diagnosis of incurable cancer is very individualized, says Holly Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston. In her research, she's found that about 20 percent of terminally ill patients are both cognitively aware and emotionally accepting of their deaths. "Those are the resilient types," she says. "They appreciate their time is limited and choose not to freak out about it." Of course, everyone goes through a grieving process, the initial shock and numbness, the denial, anger, despair. But more resilient folks move through that to a state of acceptance in which they take on those life projects and have conversations with their kids, friends, and spouses about dying. They are more likely to spend their final days in hospice, getting pain relief and saying goodbye.
Unfortunately, the majority of people don't fare so well, says Prigerson. They never come to terms with the fact that they're dying. Studies of terminally ill patients show that four months prior to their deaths, very few actually acknowledge that the end is near. The worst off, though, are the ones who understand that death is imminent but aren't emotionally accepting of it, fighting to stay alive at any cost. "They're at a much, much greater likelihood of spending their last days in pain, attached to a ventilator," says Prigerson.
That reaction, she adds, is why oncologists often fear preparing their patients for death. Far better to live in a state of blissful denial (aka hope), they figure, than a state of constant fear and anxiety. "We recognize that some individuals will neither want nor have the capacity to accept loss peacefully," she writes in a recent editorial in the British Journal of Psychiatry. "What we are suggesting is that enhanced degrees of acceptance, and reduced grief, appear associated with less suffering, implying there may be benefits to promoting acceptance."
More research needs to be done to determine which patients benefit from specific types of grief counseling. In the meantime, though, terminal cancer patients can turn to a palliative care specialist, psychotherapist, or social worker (most cancer centers now employ them), or they can check out this resource on palliative care.