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November 2007

 
Clinical Update: Eye on Eye Medicine, Part Seven
Out of Earshot: What Patients Say About Their Eye Care
By Miriam Karmel, Contributing Writer
 
 

For more than two decades, Derek Preece has been asking patients what they think about their ophthalmic care. “I have a good sense of what patients like and don’t like about what their doctors are doing,” said a senior consultant with BSM Consulting Group in Orem, Utah.

Yet what resonates most with Mr. Preece isn’t something culled from the more than 50,000 patient surveys in his database. Rather, it’s the memory of a chance observation in a doctor’s waiting room: Mr. Preece was jotting notes after having interviewed physicians and staff when an irate woman rose from her chair, walked over to the receptionist and said, “If you don’t get me to see a doctor right away, I’m going to walk out of this office and never come back.” Just then, the doctor entered the reception area and the woman stopped, midsentence, smiled and exchanged pleasantries with him. The moral of the story, said Mr. Preece, is that “patients will not complain to the doctor.”

Focus Shifts From Physician to Patient

Yet, when asked in focus groups, surveys and interviews, patients will readily express their grievances (as well as their praise). In fact, in the last 20 years or so, the body of literature that gives voice to patient concerns has grown, as researchers have begun delving into the minds of patients and asking how they feel about their medical care.

Interest in what patients think about their ophthalmic care has been prompted in part by the move away from physician-centered to patient-centered health care, according to a paper by Aerlyn G. Dawn and Paul P. Lee, MD, JD,1 in which they report on patient focus groups at Duke University.

Other motivations for hearing patients out include increased competition in the eye care market and the dramatic rise in refractive surgeries, which has drawn a growing number of patients to the field of ophthalmology for non-sight-threatening conditions.

Show that you’re listening. The resulting body of literature reveals that communication, and what colloquially is known as “bedside manner,” ranks high on the list of patient concerns. Interestingly, waiting room time, the complaint that so enraged the woman Mr. Preece observed, isn’t dramatically high on anybody’s list unless it’s excessive (beyond 20 minutes, and two hours for total visit). Waiting time is the most common complaint, but not the most damaging, Mr. Preece said. “The most damaging is: ‘My doctor doesn’t care, doesn’t listen.’”

For example, a patient might say, “My right eye is really bothering me, and it kind of burns.” Meanwhile, the doctor is already looking through the slit lamp and sees a corneal erosion or blepharitis, Mr. Preece said. “The patient wants to go through this long explanation about the fact that the condition may be the result of the makeup she wore, and the doctor, in a hurry, cuts her off and tells her what to do,” he continued. “If the patient doesn’t get to say everything he or she wants to say, then he or she feels the doctor isn’t listening. This comes across a lot in our surveys.”

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Do We See Eye to Eye?

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“While most patients are not equipped to measure the technical quality of eye care, patients are fully qualified to evaluate their ophthalmologists’ communication style and level of caring,” according to a report in Archives of Ophthalmology by Aerlyn G. Dawn and Paul P. Lee, MD, JD.1

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Honesty: The Best Policy

What do patients want from their doctors? The 38 patients in six focus groups at the Duke Eye Center rated honesty more frequently than other expectations, including interpersonal manner, physician’s skill, and logistics such as waiting room time. “The one thing I look for more than anything: honesty. I just want [the doctor] to be straightforward,” said one patient. The focus group patients, who represented a variety of diagnoses and a range of socioeconomic levels, also emphasized the importance of receiving diagnostic and prognostic information. And they wanted that information in clear language. Said one: “Give me a name [for what I have], what’s wrong with me, that’s why I’m here.”

Empathy: the best strategy. On the other hand, the patients weren’t as concerned about specific medical or surgical treatment recommendations the ophthalmologist may make. As Ms. Dawn and Dr. Lee write: “While most patients are not equipped to measure the technical quality of eye care, patients are fully qualified to evaluate their ophthalmologists’ communication style and level of caring.”

In other words, patients place a high priority on communication of medical information, explanation, listening and personal connection, rather than on the treatment itself.

It’s not that the treatment is unimportant, said Mr. Preece, it’s just harder to judge. “We all want two things from our doctors: competence and a caring attitude. But we judge them almost exclusively on the attitude. We have no frame of reference for competence.”

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Are These Patients in Your Waiting Room?

EYE PATIENT #1: JANE DOE

Her first cataract surgery, at a major medical center in New York City, was “a piece of cake,” said Jane Doe (not her real name). In under an hour, she had a new lens in her right eye. And 30 minutes later she walked out of the surgery center, went home, took a nap, watched TV, put in her eye drops and had a “swift and easy” recovery.

The surgery on her left eye, however, was a nightmare. She was prepped and waiting to be wheeled into the OR when a nurse informed her that a machine had broken down and all surgeries were canceled. Three weeks later, while on the operating table, she overheard her doctor conversing with someone. “I can’t remember exactly what they said, but the discussion was about the performance of the machine and its quirks,” said Ms. Doe, 81, a retired college professor who plays tennis, rides horses and maintains an active career as a writer.

In retrospect, she realizes the other person was a salesman associated with the surgical device, which she figures was a replacement for the one that had broken down three weeks earlier. “Obviously, the machine was being used for the first or second time,” she said, and the salesman was teaching the doctor how to use it. “Meanwhile, I had not had sufficient sedation. I was in horrible pain. Why didn’t I say anything? I was not supposed to move or talk. I wanted to get everything over with. I was thinking, ‘I have one eye at least. Maybe I won’t have the second surgery...or, better to let them continue than to stop and have this machine conk out.’ It was a nightmare.”

On a different front, Ms. Doe advises doctors and staff to call patients by their last names. “You use first names with children, not adults,” she said, recounting the overly familiar way in which she has been addressed by doctors and nurses. Endearments aimed at older adults are also out of place and sound insincere, she added. “Not all little old ladies like being called sweetie or honey.”

EYE PATIENT #2: JOHN JONES

John Jones was diagnosed with type 2 diabetes in 1994 and neovascular macular degeneration a few years later, but he hasn’t seen an eye doctor in more than a year. His recent encounters with doctors and the health care system have been so frustrating that the 67-year-old has given up.

Mr. Jones asked EyeNet to use a pseudonym. He wanted anonymity for fear of jeopardizing a generous prescription drug plan, which allows him to obtain five or six medications at little cost.

He said that some of his frustration stems from the bureaucratic nature of the Veterans Administration system, where he receives his medical care. But the barriers to treatment go beyond bureaucratic dysfunction.

Mr. Jones, who worked as a chef until his vision failed, must travel at least two hours to Northampton, Mass., for eye exams. From there, referrals to retina specialists are made to centers in New Haven, Conn., or Albany, N.Y.

Since Mr. Jones can no longer drive, he relies on his wife for transportation. But her employer allows only three personal leave days a year. Mr. Jones said the strain on him and his wife has become too much, for too little.

“I’ll go up there, they’ll dilate my eyes, look into my eyes and that’s it. They won’t say, ‘We would like to try this drug. We would like to try this treatment.’”

During his last visit, Mr. Jones asked the doctor about Lucentis. With the aid of a lighted, 7x magnifier, he had read reports on the drug and even knew the clinical trial results. He asked his doctor for the treatments. “I specifically said, ‘Lucentis,’ and she just kept rambling on about something else,” he recalled. “I wanted it so bad. I still do. But she just shrugged it off. That ticked me off, to put it mildly. I had appointments after that and I canceled them. It’s a waste of time and gas.”

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Barriers to Care

Cynthia Owsley, PhD, knew that older African-Americans don’t seek routine eye care as often as other segments of the population, and as a result they often have more advanced stages of disease when they finally do see a doctor. But she didn’t know why they stayed away.

“We wanted to find out in their own words their attitudes about what they perceived as barriers to eye care,” said Dr. Owsley, professor of ophthalmology at the University of Alabama in Birmingham. She found that inadequate transportation was the most frequently cited barrier, according to 119 participants in 17 focus groups.2 Patients also cited trust of the doctor and communication problems among the top reasons they don’t seek eye care. Said one: “The doctor leaves the room before I can ask questions.”

Still, most comments were positive, focusing on the high value they place on the role of good vision in well-being, and the importance of seeking eye care.

Physician, avoid assumptions. Dr. Owsley also conducted focus groups with eye care providers, 25 percent of whom were physicians of color. They identified some of the same perceived barriers to care as the patients—transportation and cost. “The one issue that the doctors did not emphasize but that older African-Americans mentioned a lot was the communication issue,” Dr. Owsley said.

“They may be aware of it, but it did not really come up in the focus groups. They don’t fully get the communication problem and its significance to the overall quality of care from the patient’s standpoint.”

That wouldn’t surprise Mr. Preece. “Most practices don’t really figure out what patients want,” he said. “They assume they know.” But they don’t, necessarily.

For example, complaints about hot or cold waiting rooms frequently appear in patient surveys. While waiting room temperature may be a minor complaint, it’s important to some patients, Mr. Preece said. It’s also easily remedied by adjusting the thermostat. “But you don’t know unless you ask,” he said. “You have to figure out what your patients really want from you and deliver that.”
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1 Dawn, A. G. and P. P. Lee. Arch Ophthalmol 2003;121:762–768.
2 Owsley, C. et al. Invest Ophthalmol Vis Sci 2006;47:2797–2802.
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Eye on Eye Medicine

This story is the last in a seven-part series on contemporary social and professional issues in eye medicine. The year’s previous installments and their month of publication were:

The Studied Eye: Community Research Comes of Age (April)

A Place to Call Home: Eye Surgeons in the House of Medicine (May)

Collaboration: Benefits for Both Patients and Practice (June)

World Wide Medicine: When Patients Surf the Web (July/August)

Preempting the Pain From Eye Surgery (September)

Medicine for the Uninsured Patient (October)

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PATIENT CONCERNS IN THE BIG EASY

Marvin F. Kraushar, MD, will address good physician-patient relationships, patient satisfaction, effective informed consent, accurate documentation and the management of litigious patients in “The Five Most Effective Risk Prevention Strategies,” on Sunday Nov. 11, from 2 to 3 p.m. (Event code 209.)

In “Functional Visual Loss: Is It Real, or Is It Memorex?” Steven A. Newman, MD, will discuss common functional disorders and the difference between malingering and conversion reaction, and distinguishing true pathology from exaggeration syndrome, on Monday Nov. 12, from 9 to 10 a.m. (Event code 342.)

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