From

We must redefine the patient's role

to emphasize autonomy, emancipation

and self-reliance instead of passivity

and dependence.

-Angela Coulter

CHAPTER SEVEN

Contents The Autonomous Patient and the Reconfiguration of Medical Knowledge The Changing Medical Paradigm Who's In Charge Here, Anyway? The Configuration of Medical Knowledge in 20th Century Medicine The Pitfalls of Paternalism The e-Patient-Resistant Clinician Moving Beyond Medical Paternalism The "e-Patient-Receptive" Clinician Clinician Support for the Expert Patient How e-Patients Can Help Healthcare Patient-Initiated Quality Improvement Project Patient Experience Feedback One-Page Feedback Forms Confidentiality Conclusions

[edit]   ^ The Autonomous Patient and the Reconfiguration of Medical Knowledge

Lay citizens have always been an important, though often unacknowledged, component of the healthcare workforce. When 518 individuals of all ages were asked to keep a four-week health diary in a 1995 study, only 22 percent of the 500 illness episodes they reported were ever discussed with a clinician. They were managed as follows:

Other studies have reached the same conclusion: three out of four illness episodes are managed without professional help. And nineteen out of twenty illness episodes are either partly or completely self-managed.

Yet patients of earlier generations could do only so much. While they frequently took care of minor illnesses on their own, when faced with a more serious or troubling medical concern, they had only one option: to put themselves in the hands of a medical professional. The clinician they chose would take a history, perform a physical exam, order any necessary tests, and would then explain what the problem was and what the patient must do about it. The clinician might pause on the way out, one hand on the exam room door, to ask, "Any questions?"

Patients of earlier generations often treated their doctors as if the doctors knew everything but would be upset if the patients dared ask questions. They would never question the advice or treatment that was suggested to them. Armed with information gathered from the Internet, today's e-patients have an opportunity to acquire a more sophisticated and realistic understanding of their illness and thus are much better equipped to question or interact with their clinicians. Today's e-patients can also assess a clinician's abilities and limitations more accurately. They know, for instance, that clinicians cannot always be up-to-date on the latest treatments for all diseases. They also know that, if necessary, they can get a second opinion from an online patient-helper, an online support group, or a virtual medical professional. By contrast, patients of earlier generations had little choice but to accept whatever advice or care their clinician offered.

Today's e-patients have more choices and are more confident about exercising them. When offered sub-optimal treatments, they may reject them and go elsewhere. Or they may attempt to educate their clinicians about the current state-of-the-art treatments and try to convince them to upgrade their services. In some cases, an e-patient may discover a top specialist for her specific condition, and make periodic trips to consult with him to make crucial treatment decisions, while using her local provider for medical support.

e-Patients have thus become important healthcare resources in their own right, and they have done so despite their lack of formal medical education, training, or support. Legal and cultural barriers make it difficult for them to obtain the drugs, tools, and tests they need. All too frequently, their clinicians' paternalistic or frankly antagonistic attitudes toward e-patient behaviors pose another obstacle. In spite of their increasing abilities and their desire to serve as a healthcare resource, a complex array of medical, cultural, and legal limitations remain in place and serve to discourage today's e-patients from autonomy and independence from their medical professionals.

[edit]   ^ The Changing Medical Paradigm

One of the earliest and most perceptive professional observers of the e-patient phenomena was Michael Hardey, a medical sociologist at the University of Southampton. Hardey was one of the first health professionals to describe the "rich network of personal home pages developed by patients," which now serve as "a powerful new global Internet referral network." Hardey was also the first professional commentator to identify two revolutionary aspects of the e-patient's emerging role:

Hardey goes on to describe the many ways in which e-patients have become significant providers of health information, advice, and care. And he identifies the pivotal underlying trend behind the contemporary e-patient revolution: A fundamental reconfiguration of medical knowledge and expertise, brought about by the Internet, is transforming the roles of patients and clinicians alike. Many e-patients, under certain circumstances, may have more knowledge about, or a more sophisticated understanding of, some aspects of their disease than their clinicians:

Yet many other e-patients report that their clinicians have been less than enthusiastic about their use of online health resources, their new expectation of increased autonomy, and their desire for collaborative partnerships with their providers.

[edit]   ^ Who's In Charge Here, Anyway?

Long ago, in the U.S. healthcare system in the middle of the 20th century, medical information was the exclusive intellectual property of clinicians. Mid-century medical professionals thought of this hegemony over medical knowledge as their God-given right and considered it an inherent characteristic of healthcare. But it now appears that this was merely a cultural artifact of the time. Its continuation depended on a number of prevailing conditions:

The medical information of the day was available from only a few tightly controlled sources: professional medical training, medical textbooks and journals, medical libraries, professional meetings, and in-depth consultations with knowledgeable clinicians. And with a few notable exceptions (e.g., the Library of Congress) none of these resources was available to patients.

As a medical student in the mid-1970s, I made copies of key medical journal articles for my patients and encouraged them to learn all they could about their diseases. And on several occasions I invited a few of the best and brightest to accompany me to the Yale Medical School library so that we could research their conditions together. But the medical librarians refused to admit them. When I asked why, I was told that the library's physician advisory board felt that "any patient seeking library access was probably just gathering information for a malpractice suit." It was a chilling reminder of the way I had, while doing civil rights work in the South a few years earlier, been refused admittance to several Florida restaurants because my companions were black.

[edit]   ^ The Configuration of Medical Knowledge in 20th Century Medicine

With the notable exception of Dr. Benjamin Spock (who was savagely attacked by his medical colleagues when he opened his medical toolbox for lay people, telling the parents who read his mid-century classic, Baby and Child Care, "You know more than you think you know"), few mid-century clinicians shared their in-depth knowledge with patients. While they might occasionally provide a "patient handout" containing a list of instructions for care at home, they rarely shared their medical journal articles or the thought process that led to a particular diagnoses or choice of treatments with their patients. And they were almost never willing to share their ignorance or their uncertainty.

In the late 19th century, Oliver Wendell Holmes assured a group of medical students that, "Your patient has no more right to all the truth you know, than he has to all the medicine in your saddle bags . . . he should get only as much as is good for him." My instructors occasionally cited this old chestnut when I was a medical student on the wards of Yale-New Haven Hospital in the mid-70s. And the same distinguished medical educators repeatedly reminded me that I must strive to convince each patient I saw that my colleagues and I knew everything we needed to know about his or her condition and its treatments-even when I felt this was not the case. Should I fail to do so, I was warned, my patients might "lose confidence" in me.

Many clinicians still see little need to inform or involve the patient. They may focus on treating the disease, rather than the person who has it. One of my distinguished Yale Medical School professors told us that it gave him great comfort to know that in hospitals and clinics all over the world, when confronted with a particular diagnosis, "his boys" would prescribe the treatment he always endorsed. Even though half our class was comprised of women, we all got the message: the individuality, knowledge, or capability of the patient was not essential to the physicians' treatment decisions. Prescriptions may be written and surgeries performed with little or no consideration as to how the "gold standard" of the day for that condition might apply to this particular individual. Many doctors who had a similar education have carried this attitude into their practice. Patients who fail to follow doctor's orders may be labeled "uncooperative" or "noncompliant" patients. Doctors frequently feel frustrated if their patients aren't adequately convinced to follow doctor's orders; it is, after all, for the patient's own good.

[edit]   ^ The Pitfalls of Paternalism

Health professionals historically tended to assume that only medically licensed clinicians could deal responsibly with medical matters, and that only health professionals could provide quality medical information. Patients were considered incapable of understanding and taking charge of medical matters. Given these assumptions, the 20th century medical model was paternalistic in nature. It forced patients into a passive mode, making them bystanders in matters of their own care.

"The model for most health care is still 'doctor knows best,' with patient input low, and patient preference, for the most part, disregarded," says John E. Wennberg, director of the Center for the Evaluative Clinical Sciences, Dartmouth Medical School. "The problem with this template, apart from its essentially authoritarian nature," Wennberg adds, "is that the doctor may, indeed, not know best."

As an example, Wennberg points to radical mastectomy: "It took 60 years to establish the fact that, for many patients, a simple mastectomy is just as good as a radical one. Further studies have shown that breast-sparing surgery, when combined with radiation, has about the same impact on life expectancy as simple mastectomy. The treatments, however, can have very different impacts on the quality of life. The choice between the two approaches ought to depend on which treatment the individual patient wants, and how she weighs the risks and benefits. But in many parts of the country, mastectomy is still often the only option women are given, due to physician preference for the techniques they learned 20 years ago in medical school."

Medical professionals need to acknowledge the many ways in which the paternalistic biases of our medical training have influenced our thinking. Angela Coulter, chief executive of the Picker Institute Europe, has suggested that a necessary first step in influencing the health care system to respond appropriately to our first generation of e-patients will involve coming to terms with "…the pervasive paternalistic tendencies that are still the defining characteristic of much contemporary medical care."

In her visionary 2002 manifesto, The Autonomous Patient: Ending Paternalism in Medical Care, and in her other writings, Coulter challenges clinicians and policy-makers to radically reassess a wide range of current clinical practices, with an eye to identifying and reforming these paternalistic tendencies. She identifies several dysfunctional aspects of paternalistic healthcare:

[edit]   ^ The e-Patient-Resistant Clinician

We have used this term to identify those health professionals who refuse to acknowledge their patients' competence or to accept their influence. We were unwilling to call them arrogant, as a number of e-patients suggested; for in many cases these hard-working professionals are only doing what they were taught. But, while some may be highly admirable practitioners in the context of the traditional physician-patient relationship, their behavior toward their clients is sometimes dismissive, or even abusive.

e-Patient-resistant clinicians may, in their most flagrant manifestations, use their medical authority to discourage patient questions, warn patients about becoming "overly educated," or intimidate patients into accepting their opinions-sometimes in the face of overwhelming contrary evidence.

[edit]   ^ Moving Beyond Medical Paternalism

Coulter suggests that the pervasive paternalism that has pervaded all modern healthcare systems for most of the last century can no longer be tolerated: "Given our current crisis, we must make it clear, once and for all, that such paternalistic hallmarks as long waiting times, lack of information, uncommunicative staff, and failure to seek patients' views and take account of their preferences can no longer be tolerated.

"We must redefine the patient's role to emphasize autonomy, emancipation, and self-reliance instead of passivity and dependence," Coulter urges. "Patients must be treated as co-producers of their own health and [as] case-managers when they are ill…. Rather than treating patients as passive dependents who can do nothing for themselves and whose views can be discounted, we must recognize patients' ability to contribute to their care, to critique professional services, and to choose the most appropriate treatments."

Under the 21st century patient-driven model, Coulter proposes that patients be treated as "…responsible adults, capable of gathering and assimilating information and of learning the skills needed to provide much of their own medical care." The clinicians' roles in 21st century healthcare will increasingly be to support their patients' own initiatives, to encourage patients to practice self-managed care, to help patients acquire the information, skills, tools, and support they need, and to serve as advisors along the way. When patients are unable or unwilling to deal with a medical problem on their own, a clinician should be ready to assist them in solving it.

[edit]   ^ The "e-Patient-Receptive" Clinician

When patients are given the opportunity to collaborate with a non-paternalistic clinician, asking questions in their own way and communicating via e-mail when needed, actual consultation times typically do not increase. Patients are more satisfied and feel that they have spent more time with their doctors-even though, in some cases, they may spend less time interacting face-to-face.

Family practitioner Jennifer McConnell, who was recently chosen by Maine residents as one of the state's best doctors, offers clinicians the following suggestions for relating to patients in a non-paternalistic way:

As University of Minnesota primary nursing pioneer Marie Manthey, author of The Practice of Primary Nursing, has suggested, the non-paternalistic clinician can set the proper tone by asking each patient this simple question: "What needs to happen today for you to feel that your [visit] was successful?" Beginning with this question not only invites the patient to set the agenda but also indicates the clinician's willingness to follow the patient's lead.

[edit]   ^ Clinician Support for the Expert Patient

Some e-patients develop significant expertise in their conditions. Kate Lorig and her colleagues at the Stanford Patient Education Research Center were the first to identify and study the expert patient. They found that, compared with other patients, expert patients did a much better job of managing their diseases-improving their health status, coping more effectively with fatigue, remaining less dependent on professional care, and managing the many other challenges of their chronic condition. The next step involved the development of a system by which professionals could support expert patients.

In Lorig's expert patient model, experienced patients are recruited and trained to help fellow patients with arthritis and other chronic diseases develop the necessary skills to manage their own conditions. Such patients can serve as facilitators, educators, andsupporters of self-managed care. They also encourage their fellow patients to help other patients-and teach them. With Lorig's advice and guidance, the United Kingdom's National Health Service (NHS) has developed its own expert patient program and has made it the centerpiece of their approach to chronic disease management for the 21st century. Although patient-to-patient support can be carried out face-to-face and in groups, online communication makes it possible for the expert patient to guide many more.

The NHS Expert Patient Program is currently being piloted in more than 100 primary care services in England. It will be implemented throughout the NHS by 2007. As Liam Donaldson, chief medical officer of the NHS, observes:

[edit]   ^ How e-Patients Can Help Healthcare

e-Patients are rapidly becoming a valuable new healthcare resource-managing much of their own care, providing care for others, helping professionals improve the quality of their services, and participating in a wide variety of mutually beneficial patient-professional collaborations. But as their new abilities are more widely recognized by clinicians, as they are encouraged to take on new responsibilities, and as the medical work they are doing is integrated with the clinical workflow of professional care, we suspect that they will become an even more valuable resource in the years to come.

Autonomous patients will educate themselves about their medical conditions and will manage more of their own medical care. In so doing, they will operate at a higher level: (1) setting and implementing their own healthcare agendas whenever possible; (2) diagnosing and treating more of their own medical conditions; (3) obtaining more tests and treatments on their own; (4) storing, organizing, and updating their medical information in more comprehensive and useful ways; and (5) preparing themselves for their interactions with medical professionals.

Patients and caregivers will increasingly take on the responsibility for some activities that were previously provided by professionals. And citizens of all ages will be encouraged and supported to develop their basic medical and clinical skills and knowledge so that they will be prepared to take on the appropriate medical responsibilities when they or a loved one faces a new medical challenge.

[edit]   ^ Patient-Initiated Quality Improvement Project

One of the last projects Tom Ferguson undertook before his death was a collaboration with the University of Arkansas Medical System (UAMS). As a patient himself, Tom was acutely aware of ways in which the system could better serve patients. While he was undergoing treatment, Tom's powers of observation, curiosity, and dedication to making things better led him to collaborate with his caregivers. White Paper Advisor, Charles Smith, MD, has summarized the project that Tom inspired:

The Patient Initiated Quality Improvement Project (PIQIP) at the Myeloma Institute for Research and Therapy (MIRT) was begun as a pilot project in January of 2006. Dr. Tom Ferguson, Dr. Elias Anaissie (his personal physician) and Dr. Charles Smith (Medical Director of UAMS) developed and led this project. Tom had a particular passion for the importance of patient feedback.

The eight-month Phase One pilot served as a proof of concept and helped us understand the complex dynamics involved in using patient feedback to improve the quality of care and customer service. During Phase One we collected two different forms of patient feedback from MIRT patients: (1) extensive feedback on the patient's actual experience, and (2) brief written comments collected via one-page feedback forms.

[edit]   ^ Patient Experience Feedback

We began by selecting 12 patient volunteers. We asked them to keep a journal as they went through each day at the Myeloma Clinic, and then to write up an account of their experiences, sending us this report via e-mail. Patient feedback was reviewed (via e-mail) by Drs. Ferguson, Smith, or Anaissie. After a group e-mail discussion, Dr. Smith was in charge of following up on feedback.

The same complaints came up time after time: waiting time in the clinic was too long and it took entirely too long to get certain IV drugs from the pharmacy. UAMS developed subgroups and improvement projects to correct these problems and the result was much improved flow in these areas.

One consequence of the feedback was that certain areas were bombarded with criticism. That was partly because they were in one of the particularly problematic areas. Morale started to droop under repeated criticism. So we instituted a program in which anytime an employee was singled out with a compliment, we presented her with a certificate and a gift card. Before long, presentation of the gift cards had become an "event" with co-workers gathering around, showing great interest, and congratulating the employee on his recognition. It did wonders for improving morale and making the group more receptive to feedback.

[edit]   ^ One-Page Feedback Forms

A second type of patient feedback was collected through three patient feedback boxes: one in the waiting area of the myeloma clinic, another in the infusion center and a third in the outpatient transplant area. These boxes were strategically placed so that most or all patients would notice them. They were clearly labeled: "Please tell us how we're doing..." and "Your feedback will help us make things better." Each box contained an open bin of blank feedback forms, a closed, locked ballot-box section for completed forms to be deposited, and a cup-shaped container to hold pens or pencils.

Completed feedback forms are picked up once a week by PIQIP program staff members or patient volunteers. They are keyboarded and delivered to Dr. Smith or Dr. Anaissie. After a group e-mail discussion, Dr. Smith is in charge of handling actionable feedback.

This one-page survey instrument was patterned after the patient feedback system developed by Yolanda Keeling and her colleagues at the University of Texas.

[edit]   ^ Confidentiality

Confidentiality is an important element in any effective program for collecting good patient feedback. Many patients are understandably hesitant to criticize clinic staffers, fearing reprisals, strained relations, or less than optimal care. We offer patients providing feedback several levels of confidentiality, ranging from complete anonymity to total transparency. Patients can select one of the four levels of confidentiality that best suits their comfort with disclosing their identity.

Following the pilot, we implemented an active feedback program at the Myeloma Institute in January 2007, using the one page feedback forms. In addition, the process has been adopted by the Emergency Department and the Radiology Department at UAMS. Patient feedback is critical to the care process and UAMS is using that feedback to improve patient care. We continue to evaluate the process in these three areas to determine whether we want to extend this project to the entire facility. Its role appears to complement a program such as Press-Ganey, which allows easier benchmarking with other similar institutions. The Patient-Initiated Quality Improvement Program allows much more intimate patient involvement in the feedback process and, importantly, rapid response and correction of problems.

[edit]   ^ Conclusions

As Coulter warns, clinicians must accept patients as partners. If they do not, the healthcare system will be vulnerable to a widespread loss of confidence. But if they do, there is the potential for more patients to help themselves to the health care that they need. The state of health care today is experiencing significant problems. The creation of optimal health care may thus depend on our ability to embrace our first generation of e-patients, providing them with the autonomy, authority, and empowerment they desire and deserve and inviting them to join us in a combined effort to improve healthcare for everyone. It will be only by joining forces with these new colleagues that we can hope to solve the pervasive problems that plague the healthcare system: quality, cost, access, and consumer satisfaction. ■

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