A fatal diagnosis doesn't mean life is finished

An excerpt from What Does It Feel Like to Die?: Inspiring New Insights into the Experience of Dying.

People who are diagnosed with a fatal disease sometimes do more than cope. They grow. They repair or strengthen relationships. They find a deeper spirituality or meaning in the life that remains for them. They create a legacy of good memories for the people they leave behind. When any of this happens, it tends to happen because of — not despite — the challenges of facing death and struggling with pain and loss.

Before she became a hospice nurse, Deb Callahan was a neonatal nurse. While she loved working with premature babies, witnessing their difficulties underlined for her the importance of time in the womb. “Babies need that forty weeks of gestation, to be forming and developing,” she says. Callahan, who is now a hospice volunteer, believes something similar is true at the other end of the spectrum, in the last few weeks of dying from a terminal disease. “A lot of things happen in those weeks, especially with relationships,” she says. She has watched at the bedsides of dying people as some have mended family relationships or brought a sense of deeper meaning and joy to those around them. And when her mother was diagnosed with a fatal disease, Callahan observed her growing and developing as she faced death: “My mom was kind of a fearful person,” Callahan remembers. “It was just amazing to me how she transformed after getting the terminal diagnosis.”

“Mrs. G,” the young mother whom hospice pioneer Cicely Saunders describes as one of her most memorable patients, suffered not only from blindness and paralysis, but several severe setbacks — her legs had to be strapped down during the day or they jerked, and during her last two and a half years, those muscle spasms became very painful. But in the midst of her drawn-out dying, Mrs. G was “triumphant,” Saunders writes. She influenced hundreds of people: nurses who worked with her, patients, family and friends who came to visit. What intrigued Saunders was that most of the traits that made Mrs. G so extraordinary emerged after she became ill: “Her dying had become the very means of her growth, for we learnt from her husband that her intense aliveness, gaiety and interest in other people had developed during her illness.” While Saunders is clear that Mrs. G’s charisma was exceptional, she also says it’s not unusual for patients who are facing death to develop and grow.

“Most people who are dying still have the capacity to change in ways that are important to them,” writes Ira Byock, the former hospice doctor who writes about dying. “Their transformation can also make an enormous, and lasting, difference to the people around them.”

The “idea that great good can come from great suffering is ancient,” psychologists Richard Tedeschi and Lawrence Calhoun write. Themes about the growth that can stem from suffering thread their way through Christianity, Buddhism, Islam, and Hinduism. What’s relatively new is the systematic research in psychology that supports this idea. In 1996, Tedeschi and Calhoun coined the term posttraumatic growth, which they define as “the experience of positive change that occurs as a result of the struggle with highly challenging life crises.”

A significant percentage of people who experience trauma report at least some positive outcomes from dealing with it. Depending on the criteria, Tedeschi and Calhoun estimate that between 30 and 90 percent of people who have encountered traumas say they experience some growth. “The evidence is overwhelming that individuals facing a wide variety of very difficult circumstances experience significant changes in their lives that they view as highly positive,” they write.

The researchers define trauma or life crisis as circumstances that significantly challenge people’s abilities to adapt, and shake up their understanding of the world and their own roles — “truly traumatic circumstances rather than everyday stressors.” Researchers have seen positive changes in people who have experienced a wide spectrum of life crises: refugees and hostages; soldiers after combat; victims of sexual assault or abuse; parents who have lost a child or people whose wives, husbands, or partners have died; and patients diagnosed with serious and life-threatening diseases.

But while there are several studies of posttraumatic growth in connection with serious diseases, there’s much less research that deals specifically with growth and dying. Therefore, studies cited are based mainly on groups of trauma survivors, although palliative care professionals also report stories about the growth and development they see in individual dying patients.

Just as researchers warn not to expect patients to cope in superhuman ways, they also caution that you shouldn’t expect yourself or other people to grow after a trauma. It would be a horrible distortion of the whole idea of posttraumatic growth if trauma survivors felt they had somehow failed because they didn’t achieve it, Tedeschi and Calhoun write. The possibility of a silver lining does not make a trauma less awful, and people shouldn’t view disturbing events as simply chances to grow.

Even when people grow and develop after a trauma, their suffering may not diminish. In fact, people sometimes exhibit posttraumatic growth and posttraumatic stress disorder at the same time. Not everyone finds this kind of personal growth, or necessarily should find it. In the cases of some trauma sufferers, research says personal development may not be possible. And even for those who do grow, it usually takes time.

When the famous neurologist Oliver Sacks learned he had terminal cancer, he wrote in a New York Times opinion piece that he didn’t see his life as finished: “On the contrary, I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.”

For people with a terminal disease, time becomes suspended in slow motion, allowing them the chance to grow and develop at a faster rate than at any other time in their lives. Saunders says: “We see people go through a lifetime of experience in a few weeks, a long time is fulfilled in a short time. They seem to know a timeless ‘Now’ when all the moments of time are held in stillness.”

People shouldn’t expect victims of trauma to grow or be heroic, but when a person is facing death, she needs to know that possibility exists. And the people around her need to allow for it.

Like other dying patients, and like the people who care for them, Sacks, who was eighty-one when he received his terminal diagnosis, knew he was tackling a big challenge: “This will involve audacity, clarity and plain speaking; trying to straighten my accounts with the world,” he writes.

“But there will be time, too, for some fun (and even some silliness, as well).”

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