“Awareness of Dying Led Them To Focus On Living Well”: The Study That Wants To Know What It’s Like To Live Well With Terminal Cancer

What’s special about this study is its focus on people living with the knowledge specifically of moving toward death. "While there is a growing body of research focused on select aspects of people's experiences with advanced cancer, there is little research examining the process of living with advanced cancer across the trajectory towards death," the study says. "Even patients whose prognosis is limited are living longer and want to live well, making this issue a global concern."

The study analyzed 22 interviews with Spanish citizens involved in previous research that explored their experience of living with advanced cancer.

The researchers found that people go through a five-phase “iterative process,” which basically means that the people in the study had to try and get through five phases until they felt a little more comfortable.

The five phases the study identified were:

1) struggling

2) accepting

3) living with advanced cancer

4) sharing the illness experience

5) reconstructing life

The study says each phase “is revisited over time as the illness changes and new challenges arise,” so it’s not like you go through it once and you’re done. You keep going through the cycle as things change.

“Despite the fact that the phases are interconnected and interactive, there is a sequence to the larger process of Living well with Awareness of Dying,” which means that even though all the phases are connected and the phases don’t always happen in perfect order, there is some order to the process of learning to live well.

Some of the strategies for living with advanced cancer that people talked about included, “making life adjustments, maintaining a positive attitude, normalizing, and hoping,” the study says.

“Over time, participants realized struggling against the disease created additional difficulties. In fact, they understood it was counterproductive so they made a conscious choice to let go of struggling,” the study reports, “Some referred to it as being the only choice they could make while living with the uncertainty of advanced cancer. This enabled accepting their life circumstances at some level and learning to live alongside their illness.”

“The importance of family love and support cannot be underestimated. For all the participants, awareness of dying led them to focus on living well. Sharing the experience with loved ones softened suffering remarkably. They were aware they did not have time to lose,” the study says.

"Although it might happen in moments, participants were able to put advanced cancer behind them and live life rather than living their illness," the study notes, "Living in the moment enabled deep appreciation of everyday things such as the beauty of a flower garden."

“Globally there are 14.1 million new cancer cases diagnosed each year, 8.2 million cancer deaths, and 32.6 million people living with cancer. Historically, researchers have studied the concept of living well with a chronic illness, but not specifically cancer,” the study reports, “those studies convey the idea it may be possible to live well with advanced cancer, but little is known about how it is done or how to support it.”

 

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