Talking through the toughest moments [Corrected 11/06/08] ; Health coaches use empathy and education to support patients overwhelmed by cancer or chronic illnesses

After the cancer diagnosis came the panic.

No matter how much she tried to remain upbeat, no matter how muchencouragement she received from family, Patience Verhague at timesfound herself overwhelmed by fears of pain and death.

She needed someone to talk to, someone outside her normal circle,someone who had been through what she was about to experience. So,like a growing number of patients with cancer and other chronicillnesses, she turned to a coach.

"You need to know that you can make it to the other side," saidVerhague, who has undergone 42 chemotherapy sessions for ovariancancer and will soon have surgery.

Her coach, Barbara Bartle, has talked Verhague through thetoughest moments, having been there, done that.

"You can feel sorry for yourself. I did. I cried a lot. But itdoesn't help," said Bartle, who underwent chemotherapy and ahysterectomy for ovarian cancer in 1989.

Medical care tends to focus on treating disease and its physicaleffects. Emotional problems often go untreated, either becausephysicians don't recognize them or because patients are tooembarrassed to talk about their concerns.

Yet there is evidence that without adequate support, suchproblems as depression, anxiety, insomnia and fatigue can underminea patient's well-being and ability to recover.

Also, medicine in general is more complex than ever. Patientsneed help understanding their illnesses, navigating the healthsystem, making decisions and struggling with financial issuesrelated to their illnesses.

All of which has given rise to the health coach.

>Insurers jumping on idea

Verhague relies on a cancer coach program from Buffalo's CancerWellness Center that started seven years ago with one volunteer.Today, the program works with nearly 100 volunteer coaches -- all ofthem cancer survivors -- and responds to requests for help fromaround the world.

Health insurers have jumped on the idea, as well. HealthNow NewYork, the parent company of BlueCross BlueShield of Western NewYork, two years ago touted itself as the nation's first healthinsurance plan to offer a health advocacy service as a standardfeature for its members.

The idea was to offer members an expert who would be available bytelephone and who knows the ins and outs of health care andinsurance. Other insurers are now doing the same.

"People need help with the increasing complexity of disease andthe huge amount of inaccurate information available over theInternet and elsewhere," said Dr. Jay Pomerantz, senior vicepresident and chief medical officer of BlueCross BlueShield.Patients often are too embarrassed to call back doctors with thequestions."

Patients willing to pay for support and advice also can find anassortment of coaches and advocates who sell their services on theInternet.

For instance, Rosalind Joffe, a Newton, Mass., career coach, hascarved out a subspecialty at cicoach.com aimed at helping patientsbalance chronic illness with their work.

"Many professional people with chronic illnesses are reluctant totell their employers," she said. "They continue working under theradar, yet they are in an environment that expects them to be 'on'24/7. They struggle with demands of the workplace, the expectationof their co-workers and the needs of their body."

Last year, a major report from the Institute of Medicine thatfocused on cancer care confirmed what many in the patient-supportcommunity already knew -- the health care system is failing toaddress basic psychological and social issues affecting patients.

"Americans place a high premium on new technologies to solve ourhealth care needs. However, technology alone is not enough. Healthis determined not just by biological processes but by people'semotions, behaviors and social relationships," the report concluded.

The report went further, documenting research showing thatpsychological and social problems can prevent patients fromcomplying with treatment plans and managing their illnesses. It alsoproposed a new standard of care in which doctors routinely screenedpatients for distress and referred them for help.

>Support without a group

It was with that gap in mind that Hillary Ruchlin, executivedirector of the Cancer Wellness Center, started her group's coachprogram.

"Over the years, we found that a lot of patients didn't want tojoin support groups but did want some form of support," she said."All you need to do is see a patient and coach meet for the firsttime to see that it's often a profound moment."

Verhague, a Lewiston real estate agent, turned to the programsoon after her diagnosis in late 2005.

Ovarian cancer begins in the ovaries. It is the fifth-leadingcause of cancer death in women, and the American Cancer Societyestimates that about 15,280 women will die this year because of thedisease.

Chances of surviving ovarian cancer are better if the cancer isfound early. But the disease is difficult to detect in its earlystage, with only about 20 percent of ovarian cancers found beforetumor growth has spread beyond the ovaries.

Verhague describes herself as an upbeat person with a supportivehusband and adult son. But the disease at times left her feelinglike a burden or yearning to share thoughts with someone whounderstood more deeply what she was going through.

She hooked up with Bartle early on, and the two talked on thetelephone whenever Verhague felt the need.

As she progressed through surgery and chemotherapy, the stress,pain and fear grew, especially as she lost her hair. There werecomplications and infections. Cancer therapies kill tumors but canalso cause debilitating side effects. Verhague spent days exhaustedno matter how much she slept.

"Every once in a while the fear of dying just grips you out ofthe blue," she said.

It was 11/2 years of telephone chats between coach and patientbefore the two met for lunch on a day Verhague traveled to Buffalofor an appointment at Roswell Park Cancer Institute.

If anyone was made for positive thinking, it is Bartle, a retiredexecutive secretary from Cheektowaga who brings to the coach programan outgoing personality -- despite her own health problems.

In the years shortly before her own diagnosis, Bartle's mother,father and uncle all died of cancer.

"I thought I was going to be in the ground in no time," she said."Now, I tell people to ignore the statistics. If the statistics werealways right, I wouldn't be here."

She joined the coach program in 2003, as a way to give back aftersurviving the disease.

"I do the best I can to give people encouragement and hope. It'sjust about being a compassionate person," Bartle said.

>Improving health literacy

There is more to health coaching and advocacy than emotionalsupport.

Many patients have difficulty understanding health informationand, as a result, struggle making good medical decisions. One of thekey reasons BlueCross BlueShield started its program, which is apartnership with a call-in center operated by Health Advocate Inc.,was as a response to growing concern about patients' healthliteracy.

"We've learned that the health care system is more confusing thanwe thought it was, and people need help making decisions," Pomerantzsaid.

The fact that physician reimbursement has rewarded doctors morefor doing procedures than for spending time talking with patientsalso contributes to the problem.

"The complexity of the health system is driving the need for moreinformation," said Laura Weil, interim director of the healthadvocacy graduate program at Sarah Lawrence College. "But with ourpayment system, doctors have less time to help patients sortthrough the issues. Patients are looking for other players."

e-mail: hdavis@buffnews.com