December 10, 2018

The Definition of the Situation: Resisting Discussions of Death

Headshot 3.13 cropcompressBy Karen Sternheimer

A family member’s recent illness and passing highlighted a concept within micro sociology: the definition of the situation. This idea posits that situations come with social scripts that shape our behavior within any given context. How we define a situation guides our actions; sometimes our actions might seem strange if others around us define the situation differently. Put simply, people base their behavior on our understanding of events, and we generally ascribe meaning to these events based on our interactions with others.

Although he was 85-years-old and was being treated for lymphoma, a type of cancer, my father-in-law was healthy enough to play tennis this past August when he fell and broke his hip on the court. Our family defined this situation as a sports-related injury, albeit one with more risks due to his age and overall health status. It seemed that medical professionals defined his injury the same way too.

His broken hip required surgery, and he received a partial hip replacement. The surgery went well, and after a few days he was moved to a rehabilitation facility to regain strength and to work on walking with physical therapists. This too was going well; so well that he was antsy to return home and resented that he could not get up and move around as often as he wished. Our family’s definition of the situation remained consistent with his treatment, and the interactions with health care workers mirrored our understanding of the situation.

About ten days after the surgery, he was too weak to stand up; soon he was too weak to sit for long. He was sent back to the hospital and admitted to the orthopedic unit. After a few days of antibiotics he returned to the rehabilitation facility, presumably to get back to his physical therapy. A sports injury with complications? We never really learned what made him weak; the situation was becoming less clear.

We started hearing that he wasn’t doing much physical therapy at the rehab facility. When we visited, we noticed that many of the other patients around him appeared way too weak or disoriented for therapy. It looked less like rehab and more like a way station for people who were too sick to go home but well enough not to be in the hospital.

Still, we viewed his as a rehab mission we could accomplish, felt frustrated that the staff didn’t seem to feel that way too, and pushed to get him more therapy. Sure, some days he was too weak for much movement, but the goal was to get him up and walking so he could come home. We were starting to see a fissure between how the family and health professionals were defining his situation.

No doctor or rehab staff member ever formally redefined the situation by talking to us or by suggesting that he was too sick for therapy. It became clear over time that he was getting sicker, particularly when he briefly lost consciousness and was sent back to the hospital, requiring a blood transfusion. This time he was admitted to the oncology unit: a big clue that the situation had changed.

We had the chance to speak to a doctor when he was admitted, and when my mother-in-law asked what his prognosis was, the doctor declined to answer, saying we should ask his regular oncologist (who was in private practice and unlikely to make hospital rounds). This was a very different situation indeed.

We never would find out what caused him to pass out, become weak, or later start slurring his speech and eventually need to be on high-flow oxygen. We didn’t hear the words “respiratory failure,” let alone what might be causing it or what it meant for his chances of recovery. No one at the hospital officially redefined the situation from one of rehabbing a sports injury to keeping him comfortable during his final weeks of life. The lack of clarity or communication about his condition caused confusion and stress for all of us.

When he passed away, the definition of the situation shifted, as did the behavior of those around us. Hospice and mortuary employees spoke to us in slow, hushed tones. The mortuary workers wore black, bowed their heads, and were very kind. They used a lot of euphemisms, and never referred to my father-in-law’s body as such when they took him away. When we claimed his ashes (he chose to be cremated) the staff referred to them as “cremated remains” rather than as ashes.

People around us used different social scripts, scripts that are often deeply ingrained cultural traditions that sometimes stem from religious practices. People sent cards, flowers, brought over food and came for visits. Their words were often scripted: “our thoughts and prayers are with you” and “may his memory be a blessing,” are just a few lines from cultural scripts that people employ after someone has died. They are shortcuts we all tend to use when we might not know exactly what to say during a difficult time.

Sometimes doctors don’t know what to say either. As surgeon Atul Gawande writes in Being Mortal: Medicine and What Matters in the End, doctors can do better when it comes to dealing with end-of-life issues with their patients. Because they want to be optimistic with patients, doctors may avoid difficult conversations about the realistic progression of an illness. Gawande describes in a PBS Frontline episode (embedded below) that doctors often feel a sense of failure if they can’t save their patients, and their reluctance to talk about death is a reflection of their own discomfort with mortality.

This experience has taught me that even defining difficult situations matters for the people involved. What might make discussions of death easier for medical professionals, patients, and families?



Comments

Great piece. Thank you.

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