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FP Report

July 1999
News for members of the American Academy of Family Physicians

Idaho FPs speak out against HCFA audits

BOISE, Idaho -- Catch the irony.

Idaho AFP's annual meeting
Idaho Falls FP Barry Bennett, M.D., right, told a compelling tale of a Medicare audit at the Idaho AFP's annual meeting May 14 in Boise. Afterward, many in attendance at the meeting had questions for fellow FPs and for representatives from the Health Care Financing Administration and the Medicare carrier CIGNA.

Barry Bennett, M.D., an FP in Idaho Falls, had just about concluded 15 months of volunteer effort on a state medical association panel that was attempting to make Medicare doctors more accessible to patients. Then CIGNA -- Idaho's Medicare Part B carrier -- threw an audit his way.

Fifteen patient records and almost eight months later, Bennett and his partners were told they owed the Health Care Financing Administration almost $24,000 for overpayments. Between 65 and 70 percent of those funds, Bennett said, were attributed to hospital charts and nursing home records the physicians weren't even asked to submit in the first place.

"They specifically asked for 'office clinic notes,'" Bennett told more than 50 Idaho AFP members at a chapter panel discussion on audits May 14. "How they thought they'd get hospital charts and nursing home records out of clinic notes, I do not know."

Bennett and his partners jumped through several appeal hoops, managed to submit more relevant records to HCFA and saw the repayment request drop to about $7,000.

They also turned their backs on Medicare and now make their Medicare patients pay for treatment out-of-pocket, with the mutual understanding there is no option for reimbursement.

"I feel like I was hacked out of Medicare with an ax," Bennett said after the well-attended panel discussion concluded.

When CIGNA and HCFA panelists talked, they refused to comment on Bennett's issue directly.

But O. Dan Smith, M.D., of Idaho Falls, president-elect of the Idaho AFP, did comment. He faced an audit somewhat similar to Bennett's in recent months. He said he was penalized on records he could not locate quickly enough and therefore could not provide. The reason: Some nursing home records had gone down with defunct nursing home facilities, and some of these same records were stored in places as yet unknown.

Still, though, Smith told the crowd, he and his staff devoted about 350 hours to pulling together records.

"While we feel they did their job in the audit, the appeal I made at the end of the process is that I feel (HCFA) has done a lousy job of education," Smith said. "We attended all the seminars, trying to get things right and understand the process, and they still slapped us when I believe we were trying to do it right."

The audit uproar in Idaho is an alarming development, said Academy Board member David M. West, M.D., of Grand Junction, Colo.

Given these examples, West said, it's more important than ever for FPs to keep "scrupulous" medical records for Medicare.

"We all know that if someone's looking hard enough, and the rules are complex enough, they'll find mistakes," West said.

Another view: "First of all, this situation is not helpless," said family physician Stephen Gleason, D.O., of Des Moines, Iowa, who until recently led the Physician Regulatory Initiative Team at HCFA. "But second of all, it may seem that way for a bit longer."

Gleason, current director of the Iowa Department of Public Health, said that in Iowa alone, his recent efforts have revealed that the typical FP must devote 2,000 hours to learning about these HCFA-related regulations, and another 500 hours annually to keeping up with changes.

"The solution is to bring this to the attention of those who can make changes in a constructive way," he said. "I encourage doctors to take time out to talk to policy makers and make them aware of their concerns and difficulties."

According to Gleason, a grassroots effort like this is under way in Iowa, where even FPs and nurse practitioners are getting together to work toward change.

"This is not about practice," Gleason said, "this is about having the time to practice."

Check the following resources for help avoiding fraud/abuse charges:

By Todd Simchuk, Associate Editor

Spirituality: Don't make patients check it at the door

spirituality

SEATTLE -- A good medical history encompasses the whole patient: physical ailments past and present, emotional issues, social influences, family relationships. So why disregard spirituality?

More than 70 percent of Americans say their whole approach to life is based on their religion, yet health care providers rarely take that into consideration.

Workshop presenters at the Society of Teachers of Family Medicine's spring conference made the case for expanding the routine medical history to include questions about spirituality.

Dana King, M.D., associate professor in the family medicine department at East Carolina University in Greenville, N.C., said it wasn't necessary to prove the existence of a higher power in order to prove that spiritual beliefs influence health. "What we're proving is there's something that's important to patients," he said. "It relates to how they interpret the meaning of illness in their lives, it relates to how they cope with illness and stress, and it actually relates to health outcomes because of the importance of that outlook and context in regard to how their neurology and physiology respond."

He cited numerous studies that showed a positive correlation between spiritual or religious commitment and improved mental and physical health outcomes. One study followed patients in a Maryland county for five years and showed that those who were involved in religious activities had lower rates of arteriosclerotic heart disease, lower rates of cancer and lower overall mortality than other people. Seven different studies also have shown decreased blood pressure with greater religious involvement.

King said spirituality usually has a positive effect on health, but that's not always the case. "Patients who believe in a punishing God are associated with having more neuroses," he said. "There's an 80 percent correlation between religious commitment and improved coping with illness, but it's not 100 percent."

Discussing patient's faith? Think FICA

At the Society of Teachers of Family Medicine's spring conference, Christina Puchalski, M.D., offered a mnemonic device to help physicians conduct a thorough spiritual history.

Puchalski, from Washington, D.C., said, "A bunch of us got together at tax time" and came up with FICA (which also stands for the social security law, the Federal Insurance Contributors Act). The mnemonic device offers questions you can use to cover spiritual issues with patients.

  • Faith or beliefs. What is your faith or belief? Do you consider yourself spiritual or religious? What things do you believe in that give meaning to your life?
  • Importance or influence. Is it important in your life? What influence does it have on how you take care of yourself? How have your beliefs influenced your behavior during this illness? What role do your beliefs play in regaining your health?
  • Community. Are you part of a spiritual or religious community? Is this of support to you? If so, how? Is there a person or group of people you really love and who are really important to you?
  • Address. How would you like me, your physician, to address these issues in your care?

Despite the convincing evidence, the traditional biopsychosocial model of caring for patients lacks a spiritual element, said King. Nearly all family physicians in a recent study considered spiritual well-being to be an important health component, but most reported infrequent discussions of spiritual issues with patients and infrequent referrals of hospitalized patients to chaplains. Other research has found that up to 70 percent of people think it's a good idea for physicians to talk to patients about spiritual beliefs, but only 10 percent say their physicians have done so with them.

Christina Puchalski, M.D., director of clinical research and education at the Center to Improve Care of the Dying in Washington, D.C., suggested using questions about spirituality during the section of the medical history focused on social issues. "One reason patients love it when we bring up a spiritual history is that you're asking them about who they are, and you're showing an interest in them at a very deep level," she said.

If your patient brings up the topic of religion or makes comments about God, use that opening to discuss spirituality, Puchalski said. She told of an HIV-positive patient who thought her illness was a punishment from God because she had received an abortion. She initially refused treatment until counseling changed her outlook on the disease.

If the topic of spirituality doesn't arise, bring it up, said Puchalski. "I usually open with the question, 'Do you consider yourself religious or spiritual?'" From there, she explores issues that could have health ramifications.

The STFM conference was held April 28 - May 2.

By Sharon Dickinson Dent, Associate Editor

Medical groups seek universal coverage

The Academy took the lead in an effort to promote universal health care coverage in June.

Several medical groups came to consensus on principles to guide the effort to win coverage for all Americans.

"The current health care system is not reaching everyone," said AAFP President Lanny Copeland, M.D., of Albany, Ga.

"Why the urgency? Over the past decade, we have had a number of interesting and sometimes ferocious debates in Washington about health care, patient rights, Medicare and many other health issues. During that time, more than 11 million people have been added to the pool of uninsured," said Copeland. "We're not moving in the right direction. It's time we all made a commitment to do so."

The consensus statement, "All Americans Must Have Health Insurance," was endorsed by the AAFP, AMA, and groups representing pediatricians, emergency physicians, OB-Gyns, internists and surgeons.

"We challenge the 106th Congress and declared 2000 presidential candidates to make the critical issues of health insurance coverage and access a top priority," says the statement. It embraces these concepts:

"We support pluralism of health care delivery systems and financing mechanisms in achieving coverage for and access to health care services," says the statement.

The Academy organized a multispecialty news conference June 14 at the National Press Club in Washington, D.C., to announce the statement. Attending the conference were representatives from Reuters, The New York Times and Family Practice News.

News from Headquarters

Responding to members: a reborn FP Report

If you wish FP Report would carry more news about family practice, government regulations and legislation, and what the AAFP is doing for you -- with more analysis and interpretation to help you understand what the news means for you and your practice -- you're not alone.

In a recent survey, Academy members rated FP Report high in regard to its credibility with them but expressed low interest in some kinds of coverage included in it. Simply put, members want FP Report to be more of a newspaper and less of an association "house organ."

How are we responding? We're refocusing FP Report to emphasize those three kinds of news members want-- news about family practice, government regulations and legislation, and what AAFP is doing for them -- and reducing coverage on topics of less interest. We'll include analysis and interpretation when appropriate; the special section on human genetics in this issue is a case in point. You'll notice more of this refocusing as FP Report evolves in the coming months. To top it off, the refocused FP Report will have a new look for the new century, beginning with the January 2000 issue.

We hope you'll like what you see and read in the coming months, and we'd like to hear from you. Please share your comments about FP Report by contacting Paula Binder, editor, via e-mail at pbinder@aafp.org, fax at (816) 822-8857 or phone at (800) 274-2237, Ext. 4230.

Order new Family Health Month kit now

breast cancer

October, Family Health Month, is family physicians' annual opportunity to promote their specialty and their practices and publicize key health issues to patients.

talking with children

The AAFP Committee on a Communications has completely revamped the materials and activities for this year's celebration of Family Health Month. Four themes, one for each week in October, focus on breast cancer, talking with children about tough subjects, elder abuse and mental health awareness. A September-October calendar guides family physicians and their staffs in involving local media and patients in the month's activities.

elder abuse

The new Family Health Month kit contains easy-to-personalize press releases, opinion columns, news releases, public service announcements and a banner for the office. Family physicians may also request a video news release for local TV stations to play.

mental health awareness

The kit, item #R039, will be available to members by late July for $20. Call the AAFP order department at (800) 944-0000.


AAFP has Lyme policy

The Academy has adopted a new policy on the Lyme disease vaccine, recommending that physicians consider the vaccine for patients at least 15 years old who are at high risk for B. burgdorferi infection. The policy is based on a recommendation from the AAFP Commission on Clinical Policies and Research's Working Group on Periodic Health Examination. It mirrors a new Centers for Disease Control and Prevention policy, which was published in the CDC's Morbidity and Mortality Weekly Report on June 4. To view the CDC policy, visit www.cdc.gov/mmwr on the World Wide Web.

Special Section

Human Genetics

You're family physician Chris Van Winkle. In the summer of 1999,after an extremely busy day at the office, you fall asleep in your backyard hammock. When you wake -- everything's different. It's now 2014, and you've lost all memory of the past 15 years!

You pretend everything is normal and manage to keep your cool -- until you check the appointment book and flip through some patient charts the next morning. What's this -- nose drops to treat lung cancer? an in-utero procedure to eliminate sickle cell anemia? To top it off, tomorrow you're scheduled to counsel a young woman about the possibility of learning her risk for 50 diseases, since she's mature enough to decide whether she wants such information. If she says yes and any test results are positive, you're to help her design an individualized program of preventive medicine.

It becomes clear that almost everything has changed because of advances in human genetics -- everything except your patients' need to have you as their advocate and guide in an increasingly complicated world of medical options.

You fumble your way through the day, then go home to brood. You have to catch up. How can you possibly do it? ...

In reality, you may have it easier -- most likely you'll be awake and aware in the next 15 years. But at times you may wonder how you can keep ahead of the avalanche of genetic tests and therapies that are just now starting to come your way. At a minimum, you'll probably have to refresh your knowledge of basic human genetics. Since all medical conditions except trauma are thought to have a genetic component, there might eventually be tests and treatments for almost everything.

This special section of FP Report on pages 3-5 is designed to give you a taste of what's ahead in the near future, as the world enters the "biotechnology millennium" and family practice changes forever.

Those tricky ethical issues ...

With every genetic advance, there's often ethical and legal quicksand to negotiate. For example, when two researchers recently announced success in culturing human stem cells, debate intensified on issues including the moral status of human embryos -- the source of one researcher's cells.

ethical issues
Placing boundaries on human cloning and other controversial procedures is almost impossible for one country to do, given the transnational nature of many biotech firms.

Other researchers labor to repair or replace defective genes in somatic cells. But should genes be altered only to prevent disease? Or should "enhancement" be allowed, such as changing genes for increased intelligence? for someone's definition of physical beauty? Should scientists ever alter a human's reproductive cells to eliminate a genetic defect?

Many private companies compete in the race for genetic discoveries -- raising the concern that the patenting of partial and uncharacterized deoxyribonucleic acid sequences will reward those who make routine discoveries but impede the development of diagnostics and therapeutics.

And when human genes are inserted in a cow embryo, is the result human or bovine?

Progress in genetics is so rapid that breakthroughs often occur before issues are debated publicly, and before government and scientific institutions develop guidelines and regulations for the research. And the transnational nature of many biotech firms makes it impossible for any one country to place boundaries on what will be done in the name of progress in areas including human cloning. In the words of one ethicist, an "intercultural, international, multipronged approach" is needed, like the approach used for other global concerns such as the environment.

On the local level, some of the ethical and legal quicksand extends right into the family doctor's office:

To test or not to test
More and more, patients will be asking family physicians about testing for genetic conditions. But the issue is fraught with ethical dilemmas, including the discrepancy between the capacity to predict risk and the ability to use the information to improve care. Another problem is that genetic testing provides a probability of future risk, but not the categorical yes-or-no answer that patients often want. It's important to help patients understand the meaning of test results -- positive and negative -- before they decide whether to be tested. Referring undecided patients to genetic counselors can sometimes clarify issues for them. And referring to another physician when a patient asks for testing that makes you ethically uncomfortable is always an option.

A consensus panel convened by NIH recently recommended that genetic testing for cystic fibrosis be offered to pregnant couples or those contemplating pregnancy, as well as adults with a familial history of CF and partners of people with CF, with testing phased in to ensure that adequate education and appropriate gene testing and counseling services are available. Critics counter that the recommendations in effect promote terminating CF pregnancies, and they worry that emphasis on testing could slow down research on treatments for the disease.

90% of genome sequence should be drafted by 2001

A "working draft" of 90 percent of the human genome sequence should be completed in about a year instead of by the original date of 2005, the director of NIH's National Human Genome Research Institute announced recently. Francis Collins, M.D., Ph.D., made the announcement at a June 10 media briefing on genetics held in San Francisco by the AMA.

The Human Genome Project is an international effort started in 1990. Originally conceived as a 15-year project, the project's completion date previously had been moved up to 2003 because of rapid progress by HGP researchers and private researchers.

HGP goals are to discover all the estimated 80,000 human genes and to make them accessible for further biological study, and to determine the complete sequence of the 3 billion DNA subunits (bases).

The effort was boosted recently when a consortium of private drug firms decided to contribute to the effort, Collins said.

The Department of Energy Human Genome Program and the National Institutes of Health National Human Genome Research Institute together make up the U.S. Human Genome Project.

Confidentiality
Should blood relatives be notified when a patient tests positive for a genetic mutation? "Professional Disclosure of Familial Genetic Information," a report developed by the American Society of Human Genetics, offers some guidance for health care professionals. The report says that disclosures should be permissible when attempts to encourage disclosure on the part of the patient have failed; harm is highly likely to occur and is serious, imminent and foreseeable; the at-risk relative is identifiable; and the disease is preventable or treatable, or medically accepted standards indicate that early monitoring will reduce the genetic risk.

Even if the patient and physician decide to keep the information confidential, there's no guarantee it won't be leaked some other way. According to an article in the March-April 1999 Hastings Center Report, most violations of medical privacy seem due to the legally sanctioned, or at least tolerated, flow of medical information from the orbit of the physician-patient-health insurer and health management corporations to other parties, including employers, marketers and the media. The article's author, Amitai Etzioni, called this kind of use "authorized abuse."

Discrimination
"Leaked" health information could lead to discrimination. To combat this, in 1995 the NIH/Department of Energy Joint Working Group on Ethical, Legal and Social Implications of Human Genome Research recommended that insurance providers be prohibited from using genetic information or a person's request for genetic services to deny or limit coverage, or to establish differential rates or premium payments.

In October 1996, the NIH/DOE joint working group and National Action Plan on Breast Cancer recommended that employers be prohibited from using genetic information to affect the hiring or termination of an employee unless the employer could prove the information was job related and consistent with business necessity. The U.S. Equal Employment Opportunity Commission has noted that healthy persons with abnormal genes would be protected by the Americans with Disabilities Act of 1990.

Legislation to prevent discrimination has a chance of moving ahead in Congress this year, Francis Collins, M.D., Ph.D., director of the NIH National Human Genome Research Institute, said recently.

Pharmacogenetics may help FPs tailor prevention and therapy

In the future, genetic information might help family physicians custom-design preventive care to a patient's genetic risks and strengths, or tailor drug therapy to the patient's genotype. Pharmacogenetics is a relatively new component of pharmaceutical science that studies how an individual's genotype can influence drug response and metabolism.

"I expect family medicine to see the impact in these areas, whether or not gene therapy is widely available," said Louise Acheson, M.D., M.S., associate professor of family medicine and assistant professor of reproductive biology at Case Western Reserve University School of Medicine in Cleveland. Acheson holds a translational oncology fellowship sponsored by NIH that allows her to focus on the application of new genetic knowledge to clinical practice, and she's a co-author of Clinical Genetics, the most recent AAFP Home Study Self-Assessment monograph.

There eventually may be "gene chips" that could test small amounts of DNA from blood to determine whether a patient has genes that either increase risk or reduce susceptibility to some common conditions. "Of course, there are societal issues that wll have to be resolved," Acheson said. "We'll be more comfortable doing the tests if we know that people are protected against insurance and employment discrimination."

In addition, FPs in the future should have access to genetic testing that identifies how a patient likely would respond to certain drugs, says Acheson. "If there are dozens of genes involved in high blood pressure, or clots in arteries, and also quite a few that determine how a person metabolizes medications, then someday we may be able to understand how genetic differences would play out so we could tailor our therapies to the person."

Pharmacogenetics received a major boost in April when 10 drug companies joined with the Wellcome Trust of London, the world's largest medical research charity, in the nonprofit SNP Consortium, pooling efforts to create a fine-scale map of the human genome. SNPs -- single nucleotide polymorphisms -- are one-letter differences in the genetic map. Working together, consortium members hope to speed discovery of disease-related genetic variations. The knowledge would help them fine-tune current drugs and develop new ones, as well as devise genetic tests to better match drugs to individuals.

Research results will be available to the public at the same time they're available to consortium members -- a move hailed by officials at the NIH National Human Genome Research Institute. The consortium's work will be carried out by the centers doing the publicly financed work on the Human Genome Project; each center will be given six powerful new DNA sequencing machines. The resulting publicly available genome map should reduce the chances that biotech companies will be able to get patents on large areas of the genome.

age of fruition

Here's the bad news: Diagnostic tests now are available for many genetic conditions, with more on the way. But for some conditions, once a patient tests positive, there's little you can do to help.

The good news is that some researchers think the gap between tests and treatments will begin to close fairly soon. The question is, how soon? It depends on who's predicting.

Gene therapy -- replacing a DNA sequence that causes or places a patient at risk for a disease -- could have some "limited success in clinical use within the next five years," predicted Savio Woo, Ph.D., incoming president of the American Society of Gene Therapy. He is director of the Institute for Gene Therapy and Molecular Medicine at the Mount Sinai School of Medicine in New York City.

Nelson Wivel, M.D., deputy director of the Institute for Human Gene Therapy at the University of Pennsylvania in Philadelphia, offered a more conservative estimate. "Gene therapy will turn medicine upside down within 20 years," Wivel said.

It's a therapeutic extension of organ transplantation, he said. It took about 25 years to sort out organ transplantation's developmental problems, and "I see no reason why gene therapy should have any easier time of it," he said.

But there's definitely progress. Presentations of about 1,000 studies, mostly animal research, were made at ASGT's June 9-13 annual meeting in Philadelphia. Some highlights:

Another phase II trial reportedearlier, at the American Association for Cancer Research annual meeting, showed dramatic results: A locally injected, genetically engineered adenovirus, used with two chemotherapy drugs, eliminated head and neck cancers in six patients and reduced tumors by more than half in another 10 of the 26 participating patients. Some of the patients have had no cancer recurrence during more than a year of followup. The two chemotherapy drugs alone have historically produced about a 35 percent partial response rate and almost never completely eliminate tumors, the researchers said. The study was conducted at the University of California- San Francisco Cancer Center.

A locally injected, genetically engineered adenovirus, used with two chemotherapy drugs, eliminated head and neck cancers in six patients and reduced tumors by more than half in another 10 of 26 participating patients.

Currently, about 313 protocols for gene therapy clinical trials have been approved by NIH. Wivel said gene therapy was initially seen as an ideal therapy for heritable, single-gene deficiency diseases such as sickle cell anemia. Now, almost 10 years later, only about 20 percent of protocols are studying those kinds of diseases. The rest are studying cancer, AIDS, cardiovascular disease and other conditions that have multiple genetic components, so "genetics will more and more influence the entire practice of medicine," he said.

"The sea change will occur when such products become readily available," he said. "Then, gene therapy will be available to every licensed physician in the United States."

Genetics Resources

The AAFP Home Study Self-Assessment program has two monographs that deal with genetic subjects. The August 1998 monograph Medical Ethics has a section on genetic screening tests, and the May 1999 monograph is devoted to Clinical Genetics. Members may purchase the Medical Ethics monograph for $25 without subscribing to the HSSA program, since many states now require CME hours in medical ethics. The May 1999 Clinical Genetics monograph is available to HSSA subscribers. For more information, contact the HSSA program at (800) 274-2237, Ext. 5298.

The 1999 Scientific Assembly in Orlando, Fla., will feature a lecture on "Family Genetics" on Sept. 16 and a Dialogue session on "Familial Cancer/Genetics" on Sept. 19. Both are free once you've paid the Assembly general registration fee. Register online for the Assembly by accessing www.aafp.org/assembly or call (800) 926-6890.

These recent issues of American Family Physician had articles on genetic topics: Jan. 1 ("Screening for Genetic Risk of Breast Cancer") and Jan. 15 ("Primary Care of Infants and Young Children with Down Syndrome"). Access AFP online at www.aafp.org/afp.

"Recommended Core Educational Guidelines in Medical Genetics for Family Practice Residents," endorsed by the AAFP in February, can be accessed at www.aafp.org/edu/guide/rep258.html. They were developed in cooperation with the American College of Medical Genetics, Association of Professors of Human and Medical Genetics, and other family practice groups.

The Academy is a member of the National Coalition for Health Professional Education in Genetics, an effort to provide an organized, systematic and national approach to the provision of genetics education for all health care professionals. The coalition is developing a comprehensive, Web-based genetics information center (www.nchpeg.org), that "should provide one-stop shopping for a variety of users, especially family physicians and other primary care providers," said Alan Guttmacher, M.D., senior advisor to the director for clinical affairs at the NIH National Human Genome Research Institute. The coalition also is working on a family history tool, to provide a commonly accepted diagramming method for all health professionals.

Other Web sites to try:

http://www.ncbi.nlm.nih.gov/Omim -- Online Mendelian Inheritance in Man http://www.nhgri.nih.gov -- NIH National Human Genome Research Institute
http://www.hhmi.org/genetictrail -- Howard Hughes Medical Institute http://www.cdc.gov/genetics -- CDC
http://www.er.doe.gov -- Department of Energy's Human Genome Program http://www.cff.org -- Cystic Fibrosis Foundation
http://www.tgac.org -- The Genome Action Coalition http://www.asrm.org -- American Society for Reproductive Medicine
http://www.diabetes.org -- American Diabetes Association http://www.cancer.org -- American Cancer Society
http://www.ednf.org -- Ehlers-Danlos National Foundation http://www.aids.org -- AIDS.ORG
http://www.aacr.org -- American Association for Cancer Research http://www.thehastingscenter.org/ -- The Hastings Center
http://www.nsgc.org -- National Society of Genetic Counselors

http://www.gdb.org -- Genome Database, the public repository for human genome mapping information

http://www.nih.gov/od/orda/ -- NIH Office of Recombinant DNA Activities (includes list of all genetic therapy clinical trial protocols approved by NIH, as well as information on genetic testing)

http://www.asgt.org -- American Society of Gene Therapy (includes links to other gene therapy Web sites)

http://www.med.upenn.edu/bioethic/clone3.html -- University of Pennsylvania Center for Bioethics

http://stork.cellb.bcm.tmc.edu/~genetics -- site about genetic counseling in primary care

Training the next generation

How well the next generation of primary care doctors is trained in human genetics will be influenced by a $1.6 million federal contract awarded in September 1998.

The contract for Genetics in Primary Care: A Faculty Development Initiative was awarded to the Society of Teachers of Family Medicine. The project focuses on educating three types of faculty in family medicine, pediatrics and internal medicine: inexperienced educators, career educators and experienced faculty in leadership positions.

The first year is devoted to laying the project groundwork; an executive committee is up and running, and an advisory committee is being formed. In the second year, six faculty development education and training projects will be implemented. Project outcomes will be assessed and reported in the third year.

The contract is jointly funded by the bureaus of Maternal and Child Health and Health Professions, Health Resources and Services Administration, National Institutes of Health, and the Agency for Health Care Policy and Research. AAFP Vice President for Education and Science Norman Kahn, M.D., is the project director, and STFM Executive Director Roger Sherwood, C.A.E., is project administrator.

For more information, contact project manager Ardis Davis, M.S.W., at (206) 542-1750 or ardisd7283@aol.com.

Coverage by Paula Binder, editor; layout by Mary Theobald

'Who better than their family physician to hold their hand and walk them down that scary road?'

Family physician Mark Lavallee, M.D., of South Bend, Ind., knows what it's like to counsel and support patients with a genetic disorder. He sees many patients with Ehlers-Danlos syndrome because the Ehlers-Danlos National Foundation refers patients to him.

In EDS, the body's collagen doesn't mesh together normally because of errors in metabolism. Since the collagen doesn't stick together tightly, EDS patients have joint laxity and very thin skin. Those with the most serious form of EDS die from aortic aneurysms between 30 and 40 years of age. Others have a normal lifespan but increased morbidity. The condition has been around for quite some time. The famous "rubber men of India," who travelled in circuses throughout Europe and Asia and could "bend interestingly," probably had EDS, Lavallee said.

Lavallee did a college EDS research project. In med school, he worked with researchers on familial aortic aneurysms who found the responsible genetic defect on the long arm of chromosome 2. The gene for EDS is nearby. They also developed a diagnostic genetic test for the aneurysm-linked form of EDS.

Like many genetic tests, it's a two-edged sword. "If a 35-year-old lady with EDS is worried about whether she has the kind that's linked with aortic aneurysm and whether her three kids have it, too, there are options," Lavallee said. "It's possible to wait and get echocardiograms each year -- or to take a skin punch biopsy from all four and send them to a lab that performs the EDS test. The test costs several hundred dollars, and many insurance plans won't cover the cost.

"If they're lucky and the tests show no one has the more life-threatening form, then they feel relieved and save money on echocardiograms. But if one tests positive for that form, that person has a life of worry and echocardiograms each year."

Physicians in the past have been very paternalistic about thinking they know what is best for the patient, said Lavallee. "I tell patients, 'Do you really want to know this? How much do you want to know?' Because for some people, ignorance is bliss. With information comes the good and the bad, so give them the option."

Lavallee is co-director of the South Bend Primary Care Sports Medicine Fellowship and is on the faculty of the Memorial Family Practice Residency in one of South Bend's two community hospitals. His hospital has its own geneticist and genetic counselor on staff. "They're fantastic to work with," he said. "They get involved with each case, and they refer patients to me."

But he said he brings a broader scope to the situation than a genetic counselor would because he's an FP and has done both the bench work and clinical practice. "I think of issues that a counselor often won't, such as life and disability insurance concerns," he said. "I tell patients to get their house in order first and then get the test if they want it."

"I tell patients, 'Do you really want to know this? How much do you want to know?' Because for some people, ignorance is bliss."

Lavallee also is very involved in sports medicine and finds his interest area overlap. "I recently did 400 high school physicals and picked up two cases of EDS," he said. Some athletes in sports requiring flexibility, such as wrestling and gymnastics, may have a slight form of EDS, especially those with instability of multiple joints.

"I also prescribe exercise for people with genetic problems, encourage them to find a sport they can do because it helps with depression, cardiac capacity and other benefits," he said. "And some of the physical and occupational therapies I use for athletes can help EDS patients."

His advice for other FPs? "Be compassionate, be open-minded," he said. "With genetic conditions, symptoms are the oddities that don't fit the mold of everything we've been taught.

"For EDS the average age of diagnosis is 24, so there often are four to five misdiagnoses first. Patients may have been told they're faking it, or they have fibromyalgia, so they tend to question physicians. Handle them with kid gloves."

And really listen, he said. "You need to hear the hurt, pain and confusion they may have, answer their questions and know where to refer them for testing. And when test results come back, support them because they may have gotten news they weren't really ready for. Who better than their family physician to hold their hand and walk them down that scary road?"

Keeping current in the 'genetic age'

In the coming years, you'll increasingly talk to patients, genetic counselors, physician geneticists and others about genetic concepts, and you'll have to help your staff get up to speed, too. How can you best prepare yourself and your practice for the ramped-up role of human genetics and related ethical issues?

Take CME courses in modern genetics.

"What I'm doing now wasn't in my textbooks at medical school," said Nelson Wivel, M.D., deputy director of the Institute for Human Gene Therapy at the University of Pennsylvania in Philadelphia. "We all face that. You're really a student for life, or you get ignorant pretty fast."

Use the Internet.
It's a good source for information, both basic and technical. For the basics, try the Web site of the National Human Genome Research Institute (www.nhgri.nih.gov) -- it offers a glossary of genetic terms, videos and images, frequently asked questions and links to other genetic sites. For disease-specific information, go to the Web site of the foundation for that disease, such as the Cystic Fibrosis Foundation (www.cff.org). Trying to diagnose a puzzling condition? Go to a genetic chat room on a source such as Medline or MD Consult and ask questions, suggested family physician Mark Lavallee, M.D., of South Bend, Ind., who cares for many patients with genetic conditions. You may get leads pointing you in the right direction.

Read printed publications.
"Get a book with pictures," says Lavallee. "When someone comes in with a screwy complaint that you've never seen before, flip through the book. You can only diagnose what you know."

Establish a method for getting as much family history from your patients as possible.
The National Coalition for Health Professional Education in Genetics, of which AAFP is a member, is working on a family history tool to provide a commonly accepted diagramming method for all health professionals, said family physician Michael Scotti Jr., M.D., vice president for medical education at the AMA and a co-chair of the coalition.

As part of her NIH translational oncology fellowship, family physician Louise Acheson, M.D., M.S., of Cleveland, Ohio, is working with her colleagues to develop an automated method of collecting family histories. "I'm hoping the patient could call a number and be interviewed, and the history could then be faxed to the family doctor's office," she explained. "It takes 15 to 30 minutes to develop a three-generation family tree, and many FPs don't have that time available in their patient visits."

Enlist patients in your quest for knowledge.
"Your average genetic patient, unless their mentation is affected, will teach you more than almost anything -- they desperately want as much information as possible because it's their body," said Lavallee. "They'll often do Internet searches for you, then share and discuss what they've found."

See yourself as a member of the genetics team.
Initiate relationships with genetic counselors and medical geneticists. Ask genetic counselors for a list of what they do and any special interest areas. If you're rural, check nearby cities for counselors who might work by telephone or telemedicine or who travel periodically to rural areas.

Establish a climate of "preventive ethics" in your practice.
Discuss ethical issues with patients before they arise. For example, clarifying the limits of patient-physician confidentiality can help later if a patient tests positive for a genetic condition, and you feel you must notify other relatives for their health's sake. Let patients know you could refer them to someone else if they asked you to do something you couldn't do for philosophical reasons.

Have a "standard operating procedure" for when a patient asks about genetic testing. "If a patient has a strong family history for breast cancer and wants to be tested, discuss up front how genetic tests are about odds and probabilities and the ethical issues related to testing," said Martin Lipsky, M.D., co-author of the Medical Ethics monograph published last year by the AAFP Home Study Self-Assessment program and chair of the family medicine department at Northwestern University Medical School in Chicago. "It's often overlooked that testing negative sometimes has a negative consequence -- the psychological issue of survivor guilt. Make sure they don't suffer a consequence they didn't anticipate."

Remember the role of environment.
"There's a tendency in the press to speak as if one's genetic makeup almost completely determines what one's health will be," Acheson said. "That's not the way most genetic information will play out once we know more about the complexity of it. Most bits of genetic information will have an effect in parallel with the environment that the person lives in, what they eat and what they're exposed to."


News from Washington

Thanks for the feedback!

In May, Academy members received a letter from AAFP President Lanny Copeland, M.D., of Albany, Ga., who chairs the new Task Force on Universal Coverage. The letter came with a business reply card for the member to jot down feedback for the task force, and the responses are pouring in!

So far, the task force has received about 4,500 cards, letters and e-mails. Each one is being read to help the task force determine its next steps. The responses to date have been overwhelmingly in favor of the concept of universal coverage, but that's where uniformity ends.

4,500
members
respond to
AAFP about
universal
coverage

Here are some examples:

Copeland said, "We'd like to thank Academy members for taking the time to let us know how they feel about this important issue. We will take your ideas into consideration and leave no stone unturned as we explore mechanisms that would allow all Americans to afford and receive high-quality health care."

If you'd still like to share your thoughts with the task force, you can send e-mail to fp@aafp.org with Universal Coverage on the subject line. Or send a letter to the Task Force on Universal Coverage, AAFP, 8880 Ward Parkway, Kansas City, MO 64114.

Beltway briefs

FP Paul Fischer, M.D., of Evans, Ga., was appointed to the Medicare Coverage Advisory Committee in mid-May. An AAFP nominee, Fischer joins about 100 committee members representing consumers, health professionals, and producers of pharmaceuticals and durable medical equipment. They will advise HCFA on requests for Medicare coverage of medical services and items.

Policy center opens

The Academy just opened a policy center in the nation's capital.

Why? "To bring a primary care and family practice perspective to health care policy debates in D.C.," says Larry Green, M.D., director of AAFP's new Center for Policy Studies in Family Practice and Primary Care.

The center, which opened June 8, conducts research on policy issues. As the nation grapples with limited resources and rising health care costs, Green wants to infuse a family practice perspective into discussions of strategies for funding primary care research, financing GME and including all Americans in health plans.

You may contact the center at 2023 Massachusetts Ave. N.W., Washington, D.C. 20036; (202) 986-5708 by phone; (202) 986-7034 by fax; or policy@aafp.org via e-mail.

Products/Services

Scan this area for AAFP products, services and meetings that might help you and your patients. Order these items from the AAFP order department at (800) 944-0000 unless otherwise noted; a shipping and handling fee might apply.

Letters

More smoking letters

To the editor:
Certainly I am in great and emphatic agreement with your correspondents, Drs. Douglas Lewis and Lance Monroe (writers of letters in the April FP Report). I am opposed to the AAFP stand of support for President Clinton and Janet Reno on the tobacco question. It is one more shameful chapter of this Clintonian degraded age. These suits are one more example of the impudent dominance of the law profession. ...

The truth is that the tobacco (based on the truth that it is a harmful substance) question is just another "gold mine" (not unlike the abuse of malpractice cases by greedy patients and lawyers) for the opportunistic law firms (billions of dollars -- daylight legal robberies). ...

For over 30 years, American medicine has yielded to the manipulations of legal forces in our society and has not really established a platform from which this evil can be thwarted.

E. JED JOHNSON, M.D.
Marseilles, Ill.

To the editor:
The April FP Report included letters criticizing the AAFP support of legal action against the tobacco industry. I could not disagree more with these two fellow doctors. I agree people should be held responsible for their own decisions. However, business leaders and corporations should also be held responsible for their actions.

For 40 years, the tobacco industry has lied to the world regarding the degree to which smoking causes disease and death. ... In 1994, they lied under oath before Congress, stating, "Nicotine is not addictive." The industry has financed faulty research to cast doubts upon studies showing tobacco's link to disease. Imagine a doctor, a hospital or pharmaceutical company lying about the health risks of a certain drug -- let alone an addictive drug.

I fail to understand why some people remain reluctant to apply the same ethical standards to the tobacco industry as we apply to other professions or businesses. Finally, kudos to the AAFP for recognizing this disparity and supporting legal efforts against the tobacco industry.

MICHAEL PRAMENKO, M.D.
Grand Junction, Colo.

Drop in match

To the editor:
The decline in (residency) matching numbers is likely multifactorial (see "Match Trends Show Decline for Second Year," AprilFP Report). Having been in practice since 1974, and having survived many hassles, including managed care, government programs and competition from nonphysician providers, I respectfully offer this commentary. The factors decreasing the match numbers include the following:

RICHARD D. GAGE, M.D.
Boise, Idaho

Where was AAFP?

To the editor:
"The Ganske bill was the first patient rights bill the AAFP has ever supported" (from the May FP Report). Amazing!

When the new mothers and their children and families cried out for protection from the premature discharge policies of the insurance industry, I guess the AAFP was nowhere to be found. ...

I think that the membership of the AAFP deserves to know where the candidates for leadership stand on the key issues. Why can't the membership have a direct vote -- one person, one vote? Why do we have all these complicated processes? Why can't the organization give us a position paper for each candidate, tell us where they stand and let us vote directly? ...

We need a union, and we need one now. ...

THOMAS E. McNAMARA, M.D.
Elk Grove Village, Ill.

Other News

Use analogies to help patients understand medical concepts

the heart is like a pump

SEATTLE -- An analogy is a comparison of something unfamiliar with something familiar in order to explain a shared principle. Or, to use an analogy, it's like a bridge. It spans the gap between what a physician wants a patient to learn and what the patient already knows.

At the Society of Teachers of Family Medicine spring conference, family physician Terry Ruhl, M.D., of Midland, Mich., presented a special session on using medical analogies in patient education.

"Patients often have very little medical knowledge. We're trying to teach them something that maybe took us a couple weeks of medical school to figure out ourselves ... and we're trying to explain it to our patients in a couple of minutes," Ruhl said.

With a volunteer from the audience, he acted out a scenario in which he explained to a patient that she was suffering from hypertension. The patient became confused, asking whether her hypertension had anything to do with her previous diagnosis of anemia. "I just don't understand," she said. "Last month you gave me pills for low blood and now I have high blood. Should I stop those iron pills?"

Then, Ruhl and another volunteer acted out the same scene. This time, however, the physician used medical analogies to help the patient better understand hypertension:

"Hypertension is the same thing as high blood pressure. You see, the heart is like a pump. It pushes blood from one part of the body to another through pipes called blood vessels. When you have high blood pressure, it's like your pipes are too small. The heart has to work real hard and the pressure in your vessels, or the pipes, gets real high. If the pressure gets too high, the pipes will burst. The high blood pressure also damages the pipes when your heart has to work so hard against it. Therefore, it's real important to get your blood pressure down."

When the patient asked about her "low blood," Ruhl used another analogy to explain:

"Your low blood, or anemia, is something completely different. Your blood is like a river, carrying things from one place to another. Oxygen from the air you breathe gets carried in special barges called red blood cells. If you don't have enough of these barges, you can't carry enough oxygen. Your iron pills are letting your body build more red blood cells, or barges."

Studies show that analogies help people understand and retain information, Ruhl said. "One theory is that the analog acts as a framework to organize new information," he said.

Once you've explained that the heart is like a pump and blood vessels are like pipes, patients can use their understanding of pumps and pipes to ask questions. "A patient might ask, 'If the heart's like a pump, what happens when the pump backs up?' And you could then explain that the blood then backs up into the lungs, and we call that congestive heart failure," said Ruhl.

Not all analogies work. Ruhl said a good analogy should have five key characteristics. It should be visual so patients can see it in their mind's eye, illustrative of the concept you're trying to teach, familiar to the patient, clear and short.

In addition to choosing good analogies, also give some thought to whether they are appropriate. Ruhl said physicians should use analogies when the concept is unfamiliar or hard to grasp. Sometimes a medical concept is fairly simple and straightforward, so an analogy would only confuse the patient. Or a patient may have researched the concept extensively already and may not need the comparison.

Ruhl suggested five steps to using analogies:

(1) Determine whether the analogy is necessary.

(2) Check for the patient's understanding of the analog. If the patient isn't familiar with pumps, then your heart analogy won't work.

(3) Explain the analogy. Don't just say, "The heart is like a pump." Explain how the heart is like a pump.

(4) Point out limitations of the analogy, such as, "Of course, your heart is much more complex than a simple pump."

(5) Wean the patient from the analogy. Remember, the analogy is a bridge to understanding the concept. Patients have to cross that bridge.

Analogy potpourri

Terry Ruhl, M.D., who presented "The Heart Is Like a Pump: Medical Analogies in Patient Education" at the Society of Teachers of Family Medicine's spring conference, hopes to eventually collect enough good analogies to create a Web page for them. If you have an analogy that meets the criteria listed in the story above, e-mail the analogy to him at truhl@usa.net.

Here are some analogies either presented by Ruhl or crafted by participants during the session:

FP Report is published by the AAFP News Department. Copyright © 1999 by American Academy of Family Physicians.


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