Status Updates From What Does It Feel Like to D...

If it went to zero, how would I know what that cancer’s doing in there?” patients have told him. “The pain is a way of the cancer talking to me, and I know if I totally wiped it out, I wouldn’t know what was going on in there. I want it to be at a one or a two, because that way I can keep an eye on it.”

Saunders famously focused on treating “total pain,” which included mental, physical, spiritual, and social aspects of a patient’s experience, and modern hospices in the United States have built on this concept.

Suffering, he explains, is something else: It’s distress that threatens someone’s sense of personhood—including elements like a person’s future or past, relationships with others, culture, spirituality, and needs to find work and meaning.

She always tells the person, “I’m sorry I had to meet you this way. It’s a tough time. I’m going to help you get through, and this is what to expect.”

call it “the land of the living/dying.” Patients in their study describe this state as “an unnatural place in which to live, first and foremost, because it involves a new relationship with one’s personal finitude.”

They understand they have a relatively short life expectancy,” he says, and yet there’s a part of them that continues to need to maintain the status quo, and “the expectation is that there is a future.”

“Whenever uncertainty peaks and a dying person feels as if her life is threatened, her distress also increases. Those peaks tend to occur at the beginning of a diagnosis, at the start of treatment, such as chemotherapy, and at the start of surgery, for those patients who have it. Research has found that later peaks of anxiety and distress are not usually as severe as the first wave.”