Quality of Life From the Viewpoint of Death
The 55-year-old Louisville cabinetmaker led an active life. More than anything, he loved to country line dance with his girlfriend at Jim Porter's Tavern.
A pain in his shoulder was too small an annoyance to keep him from his cabinet crafting and dancing. His family doctor treated it with painkillers, but the discomfort remained. Later, a neurosurgeon made a shocking find. The man had brain cancer. Later tests found the real source to be lung cancer that had spread throughout his body.
He had, at best, six months to live.
"Here was a guy who thinks he's totally health, with just a little pulled muscle, and then he's told he's about to die," says palliative care expert and U of L nursing professor Carla Hermann. "I see this kind of thing happen all the time in advanced lung cancer patients."
The man, whose name is confidential, was part of a study Hermann recently conducted to determine the quality of life for 80 patients with advanced lung cancer in the Louisville Metro area.
Hermann once conducted a study of how dying patients perceive and address their spiritual needs. She decided recently to take that study further.
![[Image]](images/hermann.jpg)
U of L nursing professor Carla Hermann studies how cancer patients redefine quality of life.
"I wanted to know: How are patients deciding to use the last precious moments they have and what are they--and we--doing to ensure they have the best quality of life? They're in a health-care system designed to prolong their life. Yet, quality of life issues are rarely discussed."
Hermann says she chose to interview people with stage-3 and stage-4 lung cancer--some with only weeks to live--because the closeness of death forces them to make drastic life decisions.
"They have to re-prioritize and redefine what's most important. Things that seemed important fall by the wayside. As their bodies fail, they may even redefine what quality of life means. A good day might be one without coughing or nausea, for instance."
Hermann teaches an undergraduate course in end-of-life issues. She says physicians and nurses have made progress the last 10 years in improving end-of-life care. Still, she says many patients tell her that caregivers don't always meet their most pressing needs.
"The gist of my study is to find out where we as health-care providers should intervene and how we can best help. Something can always be done."
Common problems of the dying include anxiety, depression, loss of physical abilities, financial problems and confusion navigating the health-care maze.
"Many times a patient will be seeing a surgeon, a radiation oncologist, a medical oncologist and others," she says. "It all can be very confusing."
Hermann and an assistant conducted many interviews with the subjects starting within 30 days of their diagnoses. She followed up with conversations and questions at two-month intervals.
"Half the subjects died within four months," she says. "That pretty dramatically demonstrates the need for some kind of intervention."
One of the scientific tools Hermann used was a well-known survey called the Memorial Symptom Assessment Scale, in which subjects rate their symptom pain. Such tools help caregivers better understand patient needs.
In her study, Hermann learned how her subjects decided their final goals. The cabinetmaker decided to resolve unfinished family business.
"He had a son about 30 years old with whom he had not made contact in years," Hermann says. "They were able to reestablish contact and bond, and he even got to see the grandson he had never really known before."
"It's important that we, as care providers, have honest conversations with patients about how long they have to do these things. Knowing what we can do to help them is part of the conversation. That's what drives my work."
