Sticking UP for Yourself
Becoming a smart self-advocate in medical matters
I have MS and so do many people reading this magazine, but like snowflakes, no two of us are alike. We live with a complicated disease for which there is not yet a cure. One thing we have in common, however, is a need to become good consumers and active self-advocates, persisting in our quest for knowledge about MS and insisting on appropriate medical care. I asked some top MS specialists about the concept of self-advocacy:
“The time a patient has with the doctor is necessarily limited, and if the patient leaves his or her brain out in the waiting room, he or she won’t get what’s needed from the doctor,” said neurologist George Garmany, MD, a member of Associated Neurologists of Boulder, and chair of the clinical advisory committee for the National MS Society’s Colorado Chapter. “People with MS need to know as much as they can about their disease and their own particular problems.”
Stanley van den Noort, MD, is chief medical officer of the National MS Society. He stated the case even more strongly. “It is essential for people with MS to advocate for themselves. Too many people with the disease get run over by the system and are either under-treated or over-treated. This is sometimes due to blind faith in the provider or lack of knowledge. Doctors are sometimes wrong,” he cautioned, “and patients need to take an analytical approach about what is best for them. On the other hand, patients are sometimes eager to grasp at any treatment. Some treatments may lead nowhere, cause harm, and distract everyone from the major issues.”
Loren Rolak, MD, director of Neurosciences at the Marshfield Clinic in Wisconsin, offered this advice: “Question what you are told. Get information from reliable sources. Self-advocacy means being active rather than passive.”
Dr. Rolak believes it’s important that people with MS make their feelings and desires known in order to get the care they want and need. “The neurologist may not know a lot about MS,” he said. Some surveys suggest that as many as half of all neurologists in America don’t have a single patient with MS.
All 3 of these physicians agreed that neurologists and other physicians vary in their knowledge about MS. And now there is something new: managed care.
In the world of managed care
Doctors have always had limits, but managed care systems often mandate the amount of time a doctor can spend with an individual patient.
“Even in managed care, if people are well informed and vocal–if they keep banging on the door–they will get what they want. It’s the people who give up and go home or flit around from one doctor to another who get lost in the shuffle,” Dr. van den Noort asserted. “In the short term, the easy thing for any medical system, especially managed care, is to not treat MS. The treatments have complications and side effects, there is paperwork, and everything takes time. But MS should be treated because the long-term benefit to the individual and to society is very real.”
A balancing act
What should people with MS do to find balance between being overly aggressive and being assertive self-advocates? We know that rigid assertion is often interpreted as belligerence and hostility, and we women especially know that blind, shy obedience gets us no respect at all. Experts tell us that calm assertiveness allows us to be perceived as confident, self-assured adults, but how do we find that middle ground? I spoke to Nancy Law, LSW, who is vice president for Client Programs at the National MS Society. She also lives with a chronic neuromuscular disease.
“No one may advocate for you if you do not, but being a self-advocate doesn’t necessarily mean being aggressive, pushy, and obnoxious,” Ms. Law told me. “Some people equate anger with self-advocacy, but you can avoid a lot of anger if you understand what you want. Being a self-advocate doesn’t mean that everyone gives in to you. It means doing some work educating yourself, getting good advice, finding allies, and then figuring out a way to make the system work for you.”
Mary Tinker, RN, MA, is the professional education coordinator for the Society’s Colorado Chapter, and she has MS. Because she finds the time in doctors’ offices so short, she writes letters to voice her feelings and establish better relationships.
“If I like something the doctor did, I jot a little note of thanks,” she said. Conversely, she will write to ask for clarification, make a suggestion, or register a complaint.
She also advises people to remember the nurse. “Nurses are, by professional training, meant to be teachers. Many doctors rely on them to explain, reinforce, and amplify the doctors’ instructions,” she said.
As both a person with MS and a profession al nurse herself, Ms. Tinker wrote up a Patient Bill of Rights and a Patient Bill of Responsibilities. (See boxes on page 16.)
Leaving the comfort zone
The demonstrated merits of Avonex, Betaseron, and Copaxone have put the newly diagnosed in a new world where early treatment is possible and important. Gone is the old world in which denial was seen by the professionals as a good coping mechanism, and that’s hard for some with MS. Now we have to try to keep our hopes up while, at the same time, giving ourselves or receiving injections that remind us we have a disease.
“MS can be a very lonely experience, especially at first. Few of your acquaintances have had the same experience,” Nancy Law counseled. “MS is tough on self-esteem and image, and sometimes you just don’t know who you are anymore.”
To be a good self-advocate, she proposed, “A person first needs to accept this new self–the one with MS–as a whole person with all of the rights one ever had before.” Then, she continued, “It’s just as if you had taken a new job. There’s a responsibility to learn how to do it. I tell people to remember that nobody cares as much about yourself as you do. It falls upon you, the person with MS, to become educated.”
She is right, although sometimes it seems easier to say than do. Knowledge is power, and if knowledge helps improve life for those of us with MS, it’s time for us to get savvy and smart.
“People always have had responsibility for their own medical care. But now this job is more urgent than ever,” Ms. Law said. “Today, early treatment can make a long-term difference. These new drugs do work. This development means people with MS need to move more quickly out of the comfort zone of denial, and face up to what can really happen with MS over the coming years. The Society’s staff and volunteers have a responsibility too. We are here to help people take a look at the information about these new drags and offer programs that support independence, wellness, and family life.”
Nancy Law strongly recommends becoming involved with the nearest Society chapter. “We can offer a new set of `others’ who may help you feel more comfortable with the changes that MS might bring,” she said.
What if you and a doctor disagree? Should there be an effort to work through the problem?
Dr. Rolak told me something I have long suspected. “A lot of neurologists don’t like MS patients,” he admitted. “First, until very recently there was not a lot doctors could do for people with MS, and we like to have patients we can help. If we can’t, we feel impotent and mortal and frustrated, and our patients are angry or disappointed.” The second reason is just as human. People with MS require a lot of a doctor’s time. We often have multiple health problems. “If the doctor has a busy day, the doctor might just rather see a person with one problem, like a migraine headache,” he said.
Even so, Dr. Rolak agreed that serf-advocacy is becoming the general tenor of the time and more doctors today are realizing that their patients can set the standards. And we can set the standards! While it’s true that doctors are humans with limits, too, we don’t have to let the `busy doctor’ syndrome intimidate us. We deserve quality medical care. In fact, the bottom line is our care.
Both doctor and patient should be able to communicate even when there is disagreement, Dr. Rolak said. “When they disagree, they should talk and try to come to a resolution if they can–like in a marriage. If that’s really not possible, then they may need a `divorce’ of sorts.”
Mary Tinker concurs. In her Denver-based advocacy group she encourages people with MS to know their options. Even in managed care, people may be able to find another physician. They can inform and influence a physician or use the arbitration and grievance procedures. They may even change health-care plans.
The structure of managed care means we must not only be more responsible but more assertive. “If you have any concern that you’ve received advice from a managed care doctor that is motivated by a reluctance to pay, you can sometimes strengthen your position if you get a second opinion from an MS specialist. You may have to pay for this out-of-pocket, but it could be well worth your while,” Ms. Law suggested.
Dr. Garmany supports this approach. “Your managed care company may authorize a one-time visit to an outside specialist to resolve a conflict. Or you may return to the primary care doctor for an opinion to resolve the conflict.”
Society leadership believes it may be helpful to take the insurance company or the physician a copy of the National MS Society’s Disease Management Consensus Statement (call 1-800-FIGHT MS, option #1, for assistance with this). You may also want to inform your doctor about the Paralyzed Veterans of America’s evidence-based Clinical Practice Guidelines (see page 29).
According to Dr. Rolak, the real “red flag” situations are doctors who insist on always being correct, who make up their minds and won’t consider anything else, or who don’t want you to see anyone else.
“If the therapeutic alliance is broken,” Dr. Garmany said, “a patient must change doctors. If the doctor is disrespectful, is not acknowledging a patient’s needs, becomes unprofessional or abusive, or becomes angry at questions asked–then a change must occur.”
Being a good self-advocate: preparing for office visits
Mary Tinker feels self-advocacy begins with being an efficient health-care consumer. To prepare for a doctor visit, first organize your thoughts to make the most of your limited time, she advises. Lists and diaries will be helpful in remembering questions to ask. Bringing a friend or family member with you may also be helpful. She offers these checklists:
Before the visit
[check] Why am I going to the doctor? List problems and symptoms. What? Where? When? How long? How severe? Affected or triggered by?
[check] List other concerns. Issues at work? Handling routine tasks? Sex and intimacy?
[check] What medications am I taking? Name? Dosage? Side effects?
[check] Do I need my insurance or Medicare card?
During the visit
[check] What is the diagnosis?
[check] Do I understand it well enough to explain it to a family member? If not, ask the doctor to restate.
[check] What can be done to improve the situation?
[check] Are any lab or diagnostic tests for me?
Why? How do I arrange and prepare for them?
Will the doctor call with the results or should I call the office?
[check] Am I to make any changes in diet, exercise, sleep, or stress reduction?
[check] Am I to see another doctor or health-care professional? Why? Who?
[check] Are any medications being prescribed? Name? Is generic OK? When taken? Dosage? Possible side effects?
[check] Am I to return for another visit? When?
After the visit, but before leaving the doctor’s office
[check] Schedule follow-up appointments.
[check] Clarify all insurance forms and payment procedures.
[check] Review the at-home plan. (Diet? Activity level? Treatments? Precautions?) If not clear, ask the office nurse.
[check] Should I report back to the doctor or call the office for any reason?
And later, Ms. Tinker adds, don’t hesitate to call the doctor’s office again if you have questions regarding your treatment plan.
It’s an emergency
Blurred vision is frightening, but often it’s the temporary result of being overheated. Visual problems and some other MS symptoms can be quite transitory and resolve themselves with a little time. They aren’t necessarily emergencies. Others things are or can become emergencies, though, and persons with MS should become aware of the difference.
When calling the office in an emergency, it’s important to say why you need an appointment right away. If your problem is compelling but you can’t be scheduled, ask the receptionist or nurse about alternatives. Remember that many insurance plans require a larger co-payment for emergency room visits if your physician does not send you there.
“If you think there is an emergency, you should call,” Dr. Rolak emphasized. “The burden of deciding if this is serious is up to your physician. It helps to know that the main emergencies in MS are infections, high fevers, falling and breaking a bone, or a sudden or dramatic change in symptoms–an attack of MS.”
PATIENT BILL OF RESPONSIBILITIES
* To keep scheduled appointments.
* To be honest with the doctors and other health-care workers.
* To give information about my experience and condition as clearly and briefly as possible.
* To respect the doctors and health-care workers.
* To understand that no one has all the answers to MS.
* To follow the treatment plan agreed upon.
PATIENT BILL OF RIGHTS
* To be treated with respect.
* To have and to express my own feelings and opinions.
* To be listened to and to be taken seriously.
* To set my own priorities.
* To say no without feeling guilty.
* To ask for what I want.
* To get what I pay for.
* To ask for information.
* To make mistakes.
* To choose not to assert myself.
* To change my mind.
PAM STEBBINS: Living with MS — not against it
Pam Stebbins was a librarian with a 3-year-old and a newborn baby when her MS was diagnosed 13 years ago. As a professional librarian she had an edge in conducting her own search for information. Her advice to others who want to be good self-advocates includes learning, of course. “But,” she said, “you also have to know what’s going on in your body and keep track of it. Reading about the disease and `feeling’ the disease are 2 different things. If I’m told I have to have a test, I ask what it’s for, why I need it, and if it would make any difference in my treatment.
“A person has to learn to live with MS and not against it. You can find a balance between self-help and mainstream medicine. I know my own sensations and my own disease better than my doctors do,” she concluded. “Doctors have the medical knowledge of my disease, but I have the physical knowledge of it.” –V.H.-S.
JIM REA: His tools are his freedom
In his booklet, “The 3-Minute Guide to MS”, Jim Rea wrote that “most disabilities are in the minds of the able-bodied, not the bodies of the disabled.” The booklet includes photographs of Mr. Rea climbing rocks in the western United States, a crutch in each hand.
“I have those same photos on my wall at home, next to the one of me and the kids with President Clinton,” he explained. “I saw Mr. Clinton because I have MS [Mr. Rea was National MS Society Father of the Year in 1996], but I hike despite having MS.”
Jim Rea’s wicked sense of humor is sprinkled liberally throughout his booklet: “MS is like learning a new game, except every time you think you have figured out how to play, someone changes the rules,” he wrote.
When he experiences conflicting opinion among his specialists and primary care givers, he believes the neurologist should be “captain of the ship”.
“But if you find yourself avoiding an appointment with a certain health profession. al,” Mr. Rea advised, “I think that’s a warning sign to seek another doctor.”–V. H.-S.
UNSOLICITED ADVICE: BUT THEY MEAN WELL
When we are afraid, those who care about us often fear for us–and for themselves as well. When we hurt, those closest to us feel pain and helplessness. Sometimes they even try to relieve their pain and anxiety by trying to relieve ours, offering advice we have not asked for and perhaps ought not to heed.
“That’s when being a self-advocate and being confident about your own MS is important,” Nancy Law said. The best way to counter well-meaning advice about questionable MS treatment is to be well informed. On this, all the specialists I consulted agreed.
The situation can be especially tricky if the person giving advice is important to you, Dr. Garmany noted. “Those who say they know of a cure or can cure you may not know any better, or they may be dishonest. When friends and family offer advice, listen, compare it to your own needs, but if you can’t determine whether it’s worthwhile based on that, go to your other resources for more information and advice.” –V. H.-S.
The National MS Society’s “Knowledge is Power” self-study program
Participants receive free weekly mailings over the course of 6 weeks. Sign up via the web page (www.nmss.org), or call 1-800-FIGHT MS, option #1.
The National MS Society’s publications
Call 1-800-FIGHT MS, option #1, and ask for a list of Society pamphlets.
Good self-advocates might want to have the following books in their personal library (most chapter libraries have these too):
The Questions You Have, The Answers You Need. Edited by Rosalind C. Kalb, PhD. Demos Vermande, 1996. 468 pp. $39.95.
Symptom Management in Multiple Sclerosis. By Randall T. Schapiro, MD. Demos Vermande, 1998. 204 pp. $19.95.
Multiple Sclerosis: A Guide for Families. Edited by Rosalind C. Kalb, PhD. Demos Vermande, 1998. 207 pp. $24.95.
To order these 3 books, write: 386 Park Avenue South, New York, NY 10016; or call 1-800-532-8663.
Vicki Hinson-Smith lives and works in Massachusetts and New York where she specializes in biomedical communications.
COPYRIGHT 1999 National Multiple Sclerosis Society
COPYRIGHT 2004 Gale Group