Patients need someone to help them navigate the maze
Toolbox
By JANE E. BRODY
The New York Times - Published: November 1, 2009
Two days after surgery to replace both my knees, a social worker employed by the hospital told me that the insurance company would not pay for me to stay any longer. Seeing that I was barely able to get to the bathroom on my own, she told the company I was not ready to enter rehab and insisted that I needed at least another day in the hospital.
She was right, and I was grateful for the intervention; I was in no shape to argue with insurance bureaucrats whose goal is to save money and who had no interest in, nor any way to assess, my well-being.
As health issues go, mine was a relatively minor concern. I now realize that in the complex world of modern medicine, nearly all patients, and especially those who are critically ill, need an advocate, someone to negotiate with medical professionals, insurers and others to ensure that they are receiving optimal care.
David Wayne Smith, a disability specialist at the Arizona Arthritis Center in Tucson, became an advocate for his 58-year-old son, who had been thrown from a horse and lay near death in a hospital room 500 miles away.
He had several broken ribs, bruised lungs, a fractured clavicle and serious breathing problems, Smith wrote in the September-October issue of Arthritis Self-Management. For three long weeks, during which there were many close calls with death, his son lay in a drug-induced coma, his breathing maintained by a tube in his throat and a respirator.
Steeling himself against profound feelings of helplessness and fear, Smith quickly realized he had to become part of his son's treatment team as a patient advocate.
Smith began by making himself known to the hospital administrator and everyone involved with his son's care.
He called the chief of the trauma center whenever his son took a turn for the worse and got permission for himself and his son's wife to attend daily rounds when doctors discussed the patient's progress. And when his son was ready to leave the trauma center, Smith insisted that he be transferred to a rehabilitation center, not a regular hospital bed.
Thanks in large part to Smith's advocacy, his son made rapid progress in rehab and in two weeks was able to go home, where his father has continued to advocate on his behalf, now to help counter the depression and anxiety that can accompany such a life-changing accident.
When it's important
"I see patients routinely in this situation, patients in their 30s and 40s who've been told by rheumatologists that they can no longer work and must get by on Social Security disability benefits," Smith, 83, said in an interview. "I work with them to find specialists who can help them improve their situation, and I encourage them to take better care of themselves.
"Many patients with rheumatoid arthritis are reluctant to have the surgery that can enable them to get back to work, or they don't take their medication, or they fail to see the proper specialists. "
Smith outlined four situations that call for a patient advocate:
Patients' illnesses or injuries are life-threatening, and they are unable to act in their own behalf. (As with Smith's son, such patients may be unconscious or placed in a drug-induced coma, or otherwise heavily medicated.)
Important decisions must be immediately made regarding treatment, but patients are temporarily unable to act for themselves because of severe physical or emotional trauma.
Although otherwise competent, patients are unaware of their rights, benefits or treatment options, as may happen with patients who have cancer, heart disease or severe arthritis.
Patients lack the mental ability to make rational decisions regarding their rights, treatments and benefits.
The advocate's main role is to serve as a link between patients and their health care providers. The advocate helps make sure that patients get needed treatments in a timely fashion and can alert doctors when patients fail to follow prescribed remedies.
Perhaps most important, patient advocates assist with continuity of care, ensuring that critical medical information is given to new providers and helping patients connect with ancillary personnel when employment, financial, legal or other issues arise. For example, the advocate might negotiate with an employer to adapt work responsibilities that fit the abilities of an ill or injured patient but still benefit the employer.
Sometimes, advocates also have to work with families facing role reversal issues when the family breadwinner becomes disabled. Smith said that when illness or injury disrupted the family dynamic, communication problems were commonplace.
Smith told of a woman who served as an advocate for her husband, who had been severely injured in a traffic accident.
When the trauma surgeon said the man's leg would have to be amputated, the woman refused to consent to the surgery and instead arranged with his insurance company to have him transferred to a skilled nursing facility, where he could get both physical and occupational therapy.
The wife consulted a plastic surgeon, who repaired injuries to the man's face and sewed his thumb back on. She also closely monitored his pain medication and arranged for a unit that relieves pain through electrical nerve stimulation, arguing with the insurer that this would be a less costly and more effective approach than heavy-duty drugs.
In the end, the man's leg was saved and his face minimally scarred. He could walk without any aid or limp and was able to return to work as a clinical nurse.
Key qualifications
An effective advocate, Smith said, has to be "knowledgeable, committed and aggressive — forceful in a positive way and a good listener. "
He added that it was important to be cooperative, caring and firm, but not demanding, to foster cooperation and not antagonize the patient's health care providers.
The advocate can be a family member or friend, or a professional patient advocate, who often has a background in medical social work. Some who work with older people are called geriatric care managers.
Many patient advocates are volunteers whose compensation comes from satisfaction in helping someone recover.
It is better to avoid advocates who might have a conflict of interest that could compromise patient care. Thus, using an advocate employed by the hospital or insurance company may not always serve the patient's best interests.
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