The need for health care advocates
For several years, I've been talking about the need for health care advocates, people upon whom you could call when the health care system became overwhelming as is often (mostly) the case when serious illness strikes. Think of them as experts who would rescue you when you and your family are left to navigate, communicate, even agitate in order to sort through a medical crisis.
People who act like a health portfolio manager
They'd be quarterbacks, fairy godmothers. They'd coordinate healthcare services, take on the role that portfolio managers do in the financial sector, only their case would be your health and not our money.
God knows, the stress of any illness is considerable. And when it becomes obvious that to get from one point to another in the care that's needed, you could do with a medical degree yourself, it would be great to have someone take you by the hand to shepherd you through the health care maze.
One such someone, I recently learned, is registered nurse Andrea Nathanson, who began her business Qualicare Healthcare Services after becoming disenchanted with her hospital nursing career. Her company provides case management care and Nathanson works with doctors, nurses, hospital administrators, homecare specialists, patients and their families to advocate for the best possible outcomes for her clients.
The idea of paying someone to be your health care fairy godmother (she charges $75 per hour, and expects you to sign a consent form so she can become familiar with your medical issues) makes a lot of sense to me. People today hire everyone from a wedding planner to an accountant because they don't know how to balance their books or plan a party for 100, Nathanson points out. "To ask someone to go out into a field they know little about and to ask the right questions and make necessary decisions (totally on their own) is daunting indeed. Yet we do that all the time in taking care of our relatives. We shouldn't feel guilty about saying, 'I'm in over my head.' "
Nursing care deteriorated
During her own nursing career, Nathanson has worked in everything from acute care to psychiatry, from community nursing to homecare. She has seen nursing care deteriorate due to hospital cutbacks and closures, and she feels for patients and their families. One signpost that her career path would shift was as a result of an incident she had as a nurse in an acute care setting. A dying AIDS patient wanted her to sit and talk for awhile, but she had three other sick patients whom she was told were a priority. The sick patients got better, the AIDS patient died.
It made her rethink her own priorities and she realized that thousands of patients needed not only someone to talk to, but also someone who could be their voice, who could advocate on their behalf, coordinate all the necessary services and facilitate communications between one doctor and the next. "The family doctor used to do this," she says. But whose family doctor today has the time or the energy required to perform such Herculean tasks?
Mary Embers (not her real name) had a medical crisis that began last summer when the 49-year-old was diagnosed with Guillaume-Barre disease, a creeping and crippling disorder that left her unable to walk and hospitalized for six months.
A couple of times, she was told by hospital staff that she wouldn't live to see morning. She was told more often than that that she'd never walk again. She contemplated suicide then, her family, totally frustrated with the "administrivia" of the healthcare system, called in Nathanson.
"Andrea knows how to deal with the administrative details of hospitals very well," Embers says.
"When you're so sick and are going through a catastrophic life-altering experience of the kind that illness is, you and your family tend to be very emotional. You really appreciate someone who can guide the family in their decisions, yet also command respect from the medical community."
Embers also gives Nathanson credit for her own rehabilitation. "She convinced me to get up and start fighting, to not give up. She was so strong and so positive, you couldn't be in her presence and not feel you were going to make it."
Today, Embers is at home, out of a wheelchair, and using only a walker or cane. "I give her a lot of credit for keeping the family in the loop," Embers says. "There were many times I wouldn't entirely understand what the doctors were saying."
Nathanson, having been given permission by Embers, would translate the "medi-speak" and also be the go-between between doctors and doctors and doctors and the family.
Nathanson, who may be reached at (416) 630-0202 , says her experience in many nursing situations has taught her which questions need asking and how to best move through the system. "It's not who you know," she says. "It's what I know." Her company, together with a patient's family, serves as "a united front" for the patient.
"We take care of the stress," she says. "The family should enjoy the relationship with their loved one."