consumer-oriented care

Consumer-Oriented Care A presentation featuring Zora Brown of the Breast Cancer Research Center; Penelope Ward Kyle of CSX Realty, Inc; Mary Ann Brandt, an artist; and Katherine Sharp of the National Clearinghouse for Alcohol and Drug Information. Judith B. Collins, RNC, MS, of the Medical College of Virginia~Virginia Commonwealth University served as moderator.

w omen generally are strong supporters of the consumer move- ment, and many women, including the four panelists featured here, have carried this orientation into decisions concerning their personal health care. It is not surprising, then, that wom-

en's health centers tend to be rooted in consumerism, from the initial mar- keting surveys that precede their inception, to their priorities of making health care delivery as accessible, convenient, and desirable for women as possible.

In this panel, four women of different ages and differing health needs talked about what they want from the health care system. Their preferences revealed more in common than their differences. They prefer care that em- phasizes wellness and prevention, allows them to take responsibility for their own health, and educates them to make informed choices. Convenience is important too, but the quality of relationships they establish with their providers seemed the uppermost factor on all of their minds.

S H O P P I N G FOR CANCER T R E A T M E N T IN ADVANCE

With five generations of breast cancer running in her family, Zora Brown planned ahead for her own health needs. When she discovered a lump on her breast 12 years ago, she had already chosen a team of doctors and a facility in which to be treated. Her choice, Columbia Hospital for Women in Wash- ington, DC, offered the comprehensive, personalized care she sought.

"I was able to go into a facility and have all of my care coordinated," she said. "I did not have to run here for my mammogram . . . take it over there for somebody, else to look a t . . . " and so forth. "I wanted everything in one place under one roof."

She felt more comfortable being in a facility serving only women, with predominantly female staff. "If I walked down the hall with my little gown open in the back, I wasn't going to get too intimidated," she said. The small size and central downtown location of the hospital also appealed to her.

Along with her choice of facility, another source of comfort for Ms. Brown during her illness was her high level of education and awareness about breast cancer. "I knew a lot about what my treatment was going to be," she said. "I knew that lumpectomy was available to me along with radiation and chemotherapy; I knew that I could have chemotherapy with no other treatment; I also knew that I could have modified radical mastectomy."

But whereas her own knowledge arrived through self-awareness, "just because the information was available to me did not mean it was available to

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WHI Vol. 3, No. 2 Summer 1993 CONSUMER-ORIENTED CARE 63

a friend or the neighbor next door ," she said. She went on to found the Breast Cancer Resource Commit tee , an advocacy organization encouraging African- American women to make the same careful choices she did w h e n seeking breast cancer screening and treatment.

"When looking for a place to serve you, make sure it is user-fr iendly," Ms. Brown advises her clients. "Make sure you can go in there at a time w h e n it's convenient for you ."

Another criterion is that the caregiver avoid the use of "medicalese." Illustrating, she staged a mock conversation: " 'N o w Doctor, you said that I have to have a modif ied radical mastec tomy and a node dissection . . . wha t does that mean? Does that mean you ' re going to remove my breast?' Talk to me that way!"

Ms. Brown believes she is alive today because of early detection, including breast self-examination and a mammogram. However , most African-Ameri- can women are int imidated by facilities predominant ly staffed by white people, she said, and run the risk of going wi thout necessary care. An African- American woman "would feel that she did not have the right to ask the questions about whe the r or not she should have a m a m m o g r a m . . . . If the doctor didn ' t say she should, she wou ldn ' t do it. If the doctor d idn ' t show her how to practice breast self-examination, she wouldn ' t do that ," Ms. Brown explained.

So what her organization does is "go out into our communi ty and advocate e m p o w e r m e n t of w o m e n to use the services they pay for," she said. "More than anything, I wanted to s h a r e . . , information with women. I wanted them to unders tand that these are the things that we have to do for ourselves. We cannot depend on one single individual to make determinat ions about our health."

D E S I G N I N G C A R E F O R T H E W A Y W O M E N LIVE T O D A Y

Penelope Ward Kyle has a high-pressure career and three small children, aged 4 years, 1 year, and 3 months . An at torney by training, she is vice president for administrat ion and finance of CSX Realty, Inc, in Richmond.

She first became " e m p o w e r e d " as a health care consumer th rough con- cern for her children's health. "I never really thought about trying to change things for myself ," she said. "It wasn ' t until I . . . started going to pediatri- cians that I realized that I might speak up for them in situations where I never did before speak up for myself ," she said.

Furthermore, "it was in these relationships with the pediatrics group, all male, that I first started encounter ing problems . . . . What was wrong with my children, and why couldn ' t it be explained to me in layman's terms? Why couldn' t the hours be more flexible?"

She also felt she received blank stares from the physicians for asking what were for her very necessary questions, such things as how much medicine to administer or how to take a child's temperature . After what she considers some very negative treatment, she switched to a pediatric group with three women and one man. "The difference has been like night and day," she said.

Subsequently, she has taken on a more formal role as member of an advisory council to the Depar tment of Obstetrics and Gynecology at the Med- ical College of Virginia (MCV), where a women ' s health center is in the planning stages. As a consumer helping to plan that facility, she places the highest p remium on convenience and hopes it will offer parking (particularly important if a patient will be coming in with one or more small children), child care, and reduced waiting times.

64 CONSUMER-ORIENTED CARE WHI Vol. 3, No. 2 Summer 1993

Given her busy life, time management has assumed a central priority when obtaining health care."I can't go to an appointment and sit there for an hour before I see the doctor," she said. "When I was in private legal practice, I never, never had a client sit out in the lobby for an hour waiting to see me," she added. "This is the kind of thing that can be changed and should be changed, and I hope in our women's health center it will be."

An emerging preference of hers is to obtain health care from female providers, and she hopes the new women's health center at MCV employs more women than men physicians. She also advocated use of office-based nurse practitioners as a way to economize on physicians' time yet still place a premium on patient-provider interaction. During her last pregnancy, Ms. Kyle came under the care of nurse practitioners at MCV. "I had never en- countered this before, where I had someone I could talk to at any time I wanted and didn't necessarily have to bother the physician," she commented, adding that she was "perfectly comfortable" with that individual.

She also lauded the concept of a brief exit interview, also conducted by a nurse practitioner, which she found very satisfying in her care at MCV. "I could not leave the office until I had gone into the nurse practitioner's office and spent 5 or 10 minutes" discussing what went on in the examining room, including both the physician's advice and any specific instructions, Ms. Kyle recalled.

Overall, she said, "this empowerment, this feeling of, 'I can change i t . . . I can have a better relationship with my health care p r o v i d e r . . . ' is a wonderful, wonderful feeling," Ms. Kyle concluded. "I know I'm going to have it for myself someday."

E M B R A C I N G A N D ENJOYING THE " S E C O N D HALF OF LIFE"

After attending a Jungian dream workshop where she experimented with painting by hand, artist Mary Ann Brandt took up fingerpainting because, as she described it, "the spontaneity and range of expression and sensation of moving the paint with my hands were exciting and satisfying." Since then, her works, which resemble Chinese watercolors, have received critical ac- claim. Undoubtedly it is her enthusiasm for new experiences and the saris- faction she derives from her art and from daily living that keeps this 70-plus year-old woman healthy--not just her health care.

She also has a vital sense of humor, evidenced by the fact that she opened her presentation with a reading from Dr. Seuss's You're Only Old Once (sub- titled A Book for Obsolete Children). The passage she chose depicts the ordeal of seeking care at the "Golden Years Clinic":

The Quiz-Docs will catch you! They'll start questionnairing! They'll ask you, point blank, How your parts are all faring . . . . And the next thing you know, When you've finished that test Is somehow you've lost Both your necktie and vest And an Ogler is ogling Your stomach and chest.*

Ms. Brandt's own life has not been without its share of medical trauma, she related, particularly her struggle with heart disease, the leading but virtually ignored cause of death among women in her age bracket. She had rheumatic fever as a child, and when she was 55 she developed a severe case of bacterial endocarditis. For 9 years she has lived with "near constant" heart fibrillation,

*From You're Only Old Once by Dr. Seuss. Copyright 1986 by Audrey S. Geisel and Carl Zobell, trustees under the Trust Agreement dated August 27, 1984. Re- printed by permission of Random House, Inc.


and 18 months ago she had open-heart surgery to have some valves replaced. "I've lived with a lot of tentative attitudes" as a result of all this, Ms. Brandt admitted.

She described an uncomfortable period she had after the endocarditis attack, when forced to stop estrogen replacement therapy. Racked by the combination of hot flushes and the sleeplessness they cause, she complained to her primary care physician about her symptoms.

In response he was quite unsympathetic. " 'Mary Ann, menopause is nothing but a physiologic transition,' " he replied.

"If I had something in my hand at the time, I might have thrown it at him," she recalls, yet she adds that, "he's seen me through some even more critical times since then." Because she liked him, she worked hard on their relationship over the years, persevering to make him hear and understand more of her concerns. The anecdote illustrates both the value she places on continuity of care and the investment she is willing to make to improve a relationship with a provider until it is one that embodies mutuality and trust. Now, she reports, "I feel that I'm dealing with a friend."

Ms. Brandt was very involved in forming a Women's Resource Center at the University of Richmond. Prior to taking part in this consumer panel, she polled her friends and acquaintances age 50 and over about what they might want from a women's health care facility. She got lots of replies, ranging from "convenient, easy parking" to "someone to listen to me." One woman mentioned that she feels overlooked by younger caregivers. Another said she wanted "women doctors to act as women, rather than males."

Still more replies emphasized holistic medicine. "I wish I had one doctor who was aware of my total body, not just the parts," one woman commented. Another pleaded, "Consider the spiritual part of me . . . . " which caused Ms. Brandt to remark that, "we're so prone to thinking we are human beings having spiritual experiences . . . . Let's turn that around. Let's consider that we are spirits having human experiences. It will change your whole life!"

Other remarks indicate that older women want their own insights to be validated. "I am the authority on what's going on in my body," one said. Another said, "Listen to me! I know more about my body than anyone else!"

One woman warned that "if you call me by my first name, I expect to call you by yours." Still another said, "I want to be treated as an intelligent person, a participant in any medical decisions."

Ms. Brandt herself observed that women her age can benefit from classes on building self-esteem and assertiveness training. "Those of us my age who have been career mother/homemakers are not armed with the confidence and self-reliance that . . . young professional women have," she noted. "Older women need to be taken into a relationship with this in mind."

" I ' M AGGRESSIVE W I T H THESE D O C T O R S "

Katherine Sharp brought a recent college graduate's perspective to the group. A health educator and University of Maryland graduate, she works at the National Clearinghouse for Alcohol and Drug Information in Rockville, Mary- land.

She does fit the profile of a young, assertive, professional woman, she agreed. "I'm aggressive with these doctors," she said. It's a role she feels she was groomed for at home by a father who works for the Food and Drug Administration and a mother who was trained as a nurse and now works as a health care consultant.

"I just have never been away" from the health environment, Ms. Sharp explained. She was surprised to realize how few complaints she has, com-


pared with the other panelists. The referral to her own "wonderful" doctor, an internist, came through a therapist when i t became clear that a psycho- logical problem she was dealing with had medical consequences. "Now these two doctors talk on the telephone," she reports. She feels her care is inte- grated, and applauds that concept within women's health centers.

"I go to female doctors," she added. (The last male physician she saw was her pediatrician.) "I tell them what I want. I guess it's just the way I've been brought up," she said, referring to her strong self-concept and feeling that "my body is important." In the abstract for her presentation she expressed her belief that "a doctor-patient relationship has to be fifty-fifty when it comes to responsibility and communication about one's health."

She can exert far less control over health care costs, although she tends to be equally assertive about asking how much a drug or treatment is going to cost her as about its effectiveness. She worries a great deal about retaining health coverage. "Most people my age . . . aren't receiving big paychecks; therefore, if we don't receive health insurance through our employer, we basically can't afford any," she said. She is also concerned about restrictions to coverage, such as preexisting condition clauses.

Ms. Sharp said she strongly favors health care reform and would welcome national health insurance--which she does not think would drive up costs. "If we h a d . . , health care for everyone, and you could go to the doctor 2000 times a day and never get charged for it, people aren't going to do that," she said. "Who's going to go to the doctor every time they get an itch?"

In conclusion, Ms. Sharp remarked, "I've had a great ease with this system. I've been brought up with parents who told me what to do . . . I channeled myself into it and I realize how important self-esteem and assertiveness, and sometimes aggressiveness is with the doctors," she said. She does recommend that younger people, students in high school, for example, need coaching in health education and prevention, and establishing relationships with health care providers. "If we bring everybody up like I have b e e n . . . I think there's a little more hope," she said.

D I S C U S S I O N

Q. Can only zoomen physicians provide "women-centered" care?

Johanna Abernathy, MD, disagreed with remarks that "put down" her male colleagues. "I practice with eight wonderful male physicians right now, and I would go to any one of them myself," she said, adding, "There aren't enough ob-gyn women to go a r o u n d . . , and I think that the men have a lot to offer."

Ms. Kyle responded that it might be age, and not gender, that makes her feel more comfortable with a provider. Younger male physicians who have attended medical school with women as equals "don't seem to have a problem taking me seriously," she said. "I agree, there are a lot of good male physicians and we shouldn't make it a prerequisite that any physician we see needs to be female," she added. "I do feel that something's being d o n e . . , in the medical schools that wasn't being done years ago . . . . I don't get the pats on the head that I often get with the older male physician."

Charlea T. Massion, MD, commented that research into physician-patient interactions has shown that, in general, patients who are under the care of women physicians tend to talk more, as do the doctors, that more psychosocial information is elicited, and more patient education occurs. "But all these things take time," she commented, and "as providers, we are under a lot of pressure in managed care situations to see more people in less time . . . . I

don't know how these things that are very satisfying and are, I think, essential to the relationship, are going to be advocated" in the managed care setting.


Ms. Kyle repeated that one of the ways to resolve this might be to use nurse practitioners. "I think if we can provide this intermediate level . . . you may still end up spending more time in the physician's office, but you haven't tied up the doctor for 45 minutes," she said. "If the medical profession can think about how much it saves them, I think that we, the consumers, are ready for this."

Judy Collins commented that there are plans to use primary nursing services, including a patient care coordinator for all patients, at the new MCV women's health center. "This can help providers use their time more efficiently to concentrate on their areas of expertise," she said. She added that, "As a nurse practitioner, I spend time. I talk to people. I'm into caring about who they are, and that's why they like to come to see me," she said, but this has to be balanced against keeping someone else waiting or not being reim- bursed for the consultation time.

"If there's one critical issue we've identified [with regard to women's health centers], it's how you make these two things balance out, how you make them mix," she said, referring to time management and efficiency versus hands-on, compassionate care. She thinks a collaborative, team approach can be successful, as long as the philosophy and goals of the center are shared.

Ms. Brandt noted that among male physicians themselves, attitudes vary. One respondent to her survey commented on the difference between eager, idealistic third-year medical students, with their earnest devotion to caring for people, who, by the time they emerge from internships and residencies, have had that devotion translated into dollars--causing them to schedule as many patients as possible.

In her own hospitalizations, "it was the nurses who came to my rescue," Ms. Brandt recalled, particularly following heart surgery. "The kinds of things they said to me about very practical t h i n g s . . . I would have loved to have heard from the doctor, but somehow the doctor just never did more than a look-see and out the door."

Q. How essential is respect for patient's time in the organization of a model clinic?

Howard McQuarrie, MD, commented that all the panelists seemed sensitive about their own personal time and he sought their reaction as to what priority time management should have in the clinical setting. Ms. Kyle called it "ab- solutely critical." Citing time studies that business schools conduct for in- dustry, "there's no reason why we can't get patients through physicians' offices in a timely manner," she asserted. Furthermore, she doesn't view it as a priority just for professional women. "Even if you're not working, and you're home with children, you've got the same constraints," she said. "It's an every-woman's issue, and I can't believe that there is not a way for ap- pointments to be scheduled so that you can have a fairly comfortable time frame."

Zora Brown brought up the point that time efficiency, like beauty, tends to be in the eye of the beholder. "Whenever I go to the bank and I'm standing in a long line, I'm always impatient with the person who's at the counter," she said, until she herself is up there, when she tends to take her time.

Similarly, "When I go to the doctor, I want her to spend 8 hours with me, because I've got that many questions to ask," Ms. Brown admitted. She said it's incumbent upon patients to use physicians' time efficiently, by doing things like writing down questions and a list of symptoms to share in advance. The issue "is something that we, as consumer educators, have to educate the public about," she said. "The doctor's time is valuable, and we have to be as efficient in our use of their time as they are with us."

Sylvia Drew Ivie observed that the team approach to delivering care can


be time-consuming in that more people are handling the patients' charts, creating trafficking problems. "As we become more progressive in the kind of care we give, and the number of different kinds of people who are trying to help the whole patient, it really slows up progress at the front desk," she observed.

Q. If a resource library were available in the waiting room, would it be used?

Ms. Collins asked whether the availability of educational material in the waiting room might make patients' waiting time more useful. Ms. Kyle said this would interest her. She described how, prior to embarking on fertility treatment, she went to the public library over her lunch break to research the drugs she would be taking. "I think that I would take advantage of an educational opportunity if it were right there in the center," she concluded.

Ms. Brown commented that she liked the idea of being able to watch educational videos in the waiting room, with different vignettes for different health issues.

Q. Isn't "managed care," at times, a misnomer, and what potential do women's centers have for actually managing medical treatment in a constructive way?

Ron Chez, MD, shared an experience one of his patients had earlier in the week. He had recommended major gynecologic surgery for the woman and ordered the appropriate work-up. However, an insurance doctor who had never seen the patient and had no responsibility for her care intervened and ordered his own panel of tests as required by the insurer. These were conducted at various sites, altogether requiring the patient to make six different trips totalling 47 miles, 4 hours of driving, and 2 missed days of work. On the day of surgery it turned out she had not undergone the complete profile ordered by Dr. Chez and the procedure had to be delayed while staff obtained additional necessary tests. "It is one thing for us to be your advocate, and . . . control the kind of interrelationships that we have in our offices," Dr. Chez pointed out, but women's health centers often have no control when the environment changes from outpatient to inpatient.

Ms. Brown shared some solutions being tried in a new District of Co- lumbia mammography screening outreach program. In that program, a patient navigator "guides" the patient through the mammography facility. The woman has only to identify herself to one person, who then becomes re- sponsible for "guiding her through the maze of paperwork," including insurance billing, lab work, and notifying the patients of the screening results. The program pays for two nurse coordinators at each of the screening sites. Ms. Brown said this concept could be applied to other situations, such as when a patient has an acute problem, or for other reasons needs guidance. "We've found there are women trying to get into screening programs who cannot read," she said. "We have to have within that facility an advocate on site."

Dr. Chez interjected that in his patient's case, the lab sites were not selected by him, but by the patient's insurance company on the basis of competitive bidding. "It was all based not on quality, but on quantity and on discount," he observed.

Ms. Kyle agreed that employees are being driven into managed care programs by employers seeking cost savings, and that such programs are not generally designed for the benefit of the insured. "It's this third party that we must not forget about in our relationships . . . . It's not just you and me, it's you and me and the insurance provider," she said, "and that does create quite a problem."

WHI Vol, 3, No. 2 Summer 1993 CONSUMER-ORIENTED CARE 69

Q. What is the best way to get input from consumers in a health care setting?

Carolyn Drummond commented that it's important for those in the provider community, whether in administration or direct patient care, to remember that "we don't always know what is best." Ms. Brown responded that the best approach is to ask consumers directly and to involve them in the planning process, not to wait until after the plans are complete to solicit feedback. She cited the example of a clinical trial design that had neglected to address ways to recruit black subjects because there were no blacks represented in its planning stages.

"We're always being told that 'this program is for you,' but we're never asked, 'Is this what you want?,' " she continued. She recommended con- ducting inexpensive surveys to reach consumers. "Those kinds of things can be done very simply," she said, "and you get a lot of information."

Q. How important are esthetics to the success of a women's health center? Is it important to have beautifld surroundings?

Ms. Brown raised this question in order to make a point. Not one of the panelists "has said we have to have mauve walls with color-coordinated draperies . . . . " she commented, even though consumers are always hearing about how "beautiful" these centers are going to be.

"Who cares? We want to be taken care of," she continued. "We would love to have these wonderful surroundings, but that's not what we're looking for. We are looking for quality care."


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