Palliativ pleje

Palliativ pleje
Læger ved palliativ pleje forklarer det "eksistentielle slag" som mange mennesker står overfor på slutningen af livet.

Nessa Coyle kalder det for "det eksistentielle slag" - det øjeblik hvor en døende person først realiserer på et dybt niveau at døden er lige om hjørnet. For mange kommer realitionen pludseligt: "Den sædvanlige vane at skyde tanker om døden i baggrunden er nu umulig," har Coyle, en sygeplejer og en pioneer indenfor pallivativ pleje, skrevet.

Jeg ved ikke præcist hvornår min mor, som til slut døde af fremskredet brystkræft, stod overfor sin eksistentielle krise. Men jeg har et bud på det: Mine forældre ventede en dag efter hendes første diagnose før de ringede til min bror og søster og migselv. De fik først hold i mig. Min far er ikke en specielt rolig mand, men han sagde meget roligt noget i retning af: "Jeres mor har fået stillet diagnosen, brystkræft."

Der var en pause, og derpå en lyd som jeg bedst kan beskrive som værende ikke rigtigt en hulken eller en hylen, men vildt. Det var så ukarakteristisk at jeg på det tidspunkt ikke vidste og forøvrigt stadigt ikke ved, om lyden den kom fra min far eller mor.

Jeg tror at det var øjeblikket af hendes eksistentielle slag.

Kommentar: Denne artikel er delvis oversat til dansk af fra: Coming to terms with the prospect of dying

For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the "first trauma": the emotional and social effects of the disease.

The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But "at least in Western culture, we think we're going to live forever." Lee's advanced-cancer patients often tell her they had thought of death as something that happened to other people-until they received their diagnosis. "I've heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it's confirmed that it is cancer," she says.

The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. "It's not necessarily verbal; it's not necessarily what other people are telling you," Coyle says. "Your soul may be telling you, or other people's eyes may be telling you."

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: "All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis ... Whether by illness or accident, our potential trajectory is suddenly changed."

In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person's whole belief system may be called into question because "virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management," Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. "I didn't care about anything," one patient said. "I had just about given up."

In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis-perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn't know what it was-and then make it clear she wasn't interested in receiving a diagnosis in the near future.

Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. "You have to live with awareness of dying, and at the same time balance it against staying engaged in life," he says. "It's being able to hold that duality-which we call double awareness-that we think is a fundamental task."

Whether or not people are able to find that balance, the existential crisis doesn't last; patients can't remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. "Once you've faced [death] like that once, it's not new knowledge in your consciousness anymore," she says.