UF Study: Terminally Ill Put Little Thought Into Choosing Treatment

Published: December 23rd, 1997

Category: Aging, Family, Florida, Health, Research

GAINESVILLE — What may be the decision of a lifetime often takes mere minutes when people consider treatment for fatal illness, a new University of Florida study finds.

Forty-two percent of patients with terminal cancer at a Gainesville cancer clinic “mindlessly” went along with whatever their doctors told them to do, not bothering to ask questions or seek any further information, said Suni Petersen, who did the research for her doctoral dissertation in counselor education at UF.

“I suspect more thought goes into buying a car than what kind of medical treatment to get for a life-threatening illness,” she said. “So many of these people made premature decisions, giving the whole matter less than five minutes thought.”

Yet research shows that patients who actively participate in treatment cope better and live longer, even if there is no cure for their illness, Petersen said.

The findings have serious implications for the American public with changes in the health care system as family practitioners give way to HMOs and managed care, she said.

“It used to be that patients had family doctors they had known and trusted for 20 years with whom they could feel comfortable making life and death decisions,” she said. “Now patients face more and more situations where their health is going to be in unfamiliar hands and many of them don’t know how to take control over their health and well-being.”

The patients making decisions prematurely were the largest of four groups involving the 120 patients interviewed last spring for the study. Another 32 percent were at the other extreme in that they practiced “active decision-making.” They not only questioned their doctor at length about matters such as whether to get radiation, chemotherapy or a bone marrow transplant, but also sought information elsewhere, including medical journals, the Internet and the American Cancer Society, Petersen said.

Twenty-three percent made their decisions passively, giving a lot of thought to their doctor’s advice and any other information provided to them, but took no initiative to find out more on their own. Another 3 percent were “ruminators,” who spent lot of time worrying about which treatment was best but never came to any conclusion, she said.

The distress in having to make important decisions about a life and death matter may explain why so many people take the easy route and act mindlessly, Petersen said.

“Pondering something as difficult as cancer raises anxiety,” she said. “Sometimes it’s more comfortable to place the responsibility for the decision on someone else so you don’t have to live with the uncertainty about whether or not you’re doing the right thing.”

Many men who made difficult decisions every day in their professional lives — as attorneys, professors and corporate leaders — made “mindless decisions” when it came to their own medical care, the study shows. Among elderly males, this style of decision-making was more common than any other, Petersen said.

“We live in a hierarchical society, and older males are more likely to have lived their lives according to accepted standards, not questioning doctors, who are seen as authority figures,” Petersen said. “Whereas women, knowing that society doesn’t always look after them, more often think about a decision and not just take what the doctor gives them.”

Dr. Robert Dew Marsh, an associate oncology professor at UF, said Petersen “correctly points out that the reasonable health professional should spend as much time as necessary with each individual patient to ensure that the appropriate decisions are made, taking into consideration their methods of coping with catastrophic illness — both as an individual and as a couple.”

In the future, aging baby boomers may take a different approach from their parents.

“From very early in their lives, this generation has challenged the status quo,” Petersen said. “And growing up in such a youth-oriented culture, the idea of aging is pretty awful to them. At 50, they’re much more active than previous generations. As they reach the stage in life where their health starts to deteriorate, they may be more likely to take an active role in how to address and treat their illnesses.”

Credits

Writer
Cathy Keen

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