Wednesday March 26, 2008
Right dose of help
Cancer treatment choices are often overwhelming. Finding a trained ‘coach’ can help with decisions.
THE advice made her head spin: Have the lump removed. No, let them take the whole breast. Chemo? Radiation? Everyone seemed to have an opinion.
“You’re just so overwhelmed with information,” said Bernie Brann, a newly diagnosed cancer patient.
Bad advice, or just too much of it, can compound the trauma and damage done by the disease itself, cancer patients often find.
Bernie Brann found that bad, or too much, advice can compound the trauma done by cancer itself. Friends and relatives are important for support, but when these untrained people act as cancer coaches, they can sway people to make poor decisions about their care.
This includes survivors, whose opinions are highly valued by patients suddenly facing the scary diagnosis. They may know a lot about cancer, but can do harm if they project their own experiences onto someone else, who may have a different form of the disease that needs different treatment. Survivors also may be out of touch with changes in the field, where genetic discoveries are rapidly reshaping notions of who needs chemotherapy and what kind.
What’s the solution? Many advocacy groups and hospitals are using “professional” coaches – trained volunteers or paid workers who can objectively help new patients navigate the maze of information and options.
The American Cancer Society started a patient navigator programme a few years ago that now operates in 87 locations and is planning to expand. The US National Breast Cancer Coalition also trains coaches, and big treatment hospitals like the University of Texas’ MD Anderson Cancer Centre are increasingly using them for breast, prostate, lung and other types of cancer.
To find a coach or navigator, patients can ask their doctors, local cancer hospitals or groups like the cancer society for help. Brann, feeling a need for unbiased help, found a coach by calling the Cancer Resource Centre of the Finger Lakes, where associate director Bob Riter provided it.
“People are usually too free about giving advice,” said Riter, a survivor of male breast cancer and graduate of the San Antonio programme. “We never tell people what to do. We provide information, and we help them think out loud.”
Whether amateur or professional, a good cancer coach should offer these things, experts say:
·Support: an ear to listen, a shoulder to cry on, a hand to hold.
·Resources: reliable information or help getting it, and only if the patient wants it.
·Objectivity: a willingness to help patients discover what is best for them, rather than to validate the coach’s own cancer battle and choices.
“There’s a big difference in saying, ‘This is what I did’ and ‘Here’s what you should do,”‘ Riter said.
It is good if the coach can ask questions, gather information and take notes for the shell-shocked patient to use later, said Meg Gaines, a lawyer and ovarian cancer survivor who runs the Centre for Patient Partnerships. It is bad if the coach interferes with the patient’s decisions.
Doctors often find themselves in the middle, fighting for the patient’s trust. Some choices come down to personal values and risk tolerance, said Dr C. Kent Osborne, a breast cancer specialist at Baylor College of Medicine in Houston.
As for patients being swayed by others, “a lot of that occurs when they’re not in the doctor’s office and they go back to their home and their community,” Osborne said.
Patients can fall into the same trap when they coach each other, Gaines said.
“This is the potential downside of support groups ... you don’t have expertise around the room,” she said.
Bernie Brann did not seek a lot of advice when she was first diagnosed. Doctors told her she could either have a mastectomy or just the lump removed, and at first, she thought she would do the latter. “But I had so many people saying, ‘No, no, no, that’s not the way to go.’ Most people said, ‘Have a mastectomy.’ It was so radical. It just overwhelmed me. It was not something I wanted to do.”
Ultimately, she changed her mind about what would be best for her, and had a mastectomy in late December. “I didn’t want to go through this again. My feeling was, get in there, get rid of it, get on with your life,” she said. – AP
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