Achieving an effective partnership
Nobody likes to go to the doctor, but when a child has a neuromuscular disease, doctor visits usually are a regular part of life.
A good working relationship between parents and their child’s various doctors goes a long way toward making the experience positive for everyone involved and ensuring the child gets the best medical care. To that end, there are steps both doctors and parents can take to help create an effective and successful partnership.
Naturally, parents want a physician for their child who’s knowledgeable, honest and patient. Beyond that, there are a wide variety of qualities parents seek.
They want the doctor to be upbeat and compassionate, and willing to “go the extra mile.”
Some list empathy, sympathy and punctuality, and some want a doctor who’s genuinely interested and places a premium on helping them understand their child’s diagnosis and treatment options.
“What we as parents wish is that our doctors could first take a look from their side, which is the clinical side, and then also take a look from the parents’ side and try to understand what it’s like to live with the disease on a day-to-day basis,” says Charlotte Hwang, of Tucson, Ariz.
Hwang, whose 15-year-old son Emery Martin has Duchenne muscular dystrophy (DMD), says her family has been fortunate to have dealt with physicians and other health care professionals who’ve made their experience extremely positive overall.
“Most of the doctors we’ve seen have been wonderful,” she says. “They come in and we can tell that they care about Emery and about what we’re going through.”
Hwang notes, however, that occasionally she and her husband have experienced appointments with Emery where “technicians come in and they sit there and take notes, and they look at you like you’re a person in a cage.” Not only is that sort of behavior offensive, Hwang says, but it fosters anxiety in kids and their families.
Essentially, she says, parents want to get a sense that their family and their child’s doctor are “in it together.”
Debbie Walker of Powder Springs, Ga., says she wants a doctor who avoids making assumptions based on what they’ve seen in the past and who recognizes that their patients are all different.
Prior to going to an MDA clinic, Walker recalls doctors telling her and her husband, Jimmy, that their son Jacob, who has spinal muscular atrophy type 2 (SMA2), would never use his hands, sit up or live past the age of 12. Undaunted, she incorporated a lot of therapies into their daily lives, doing stretching, exercises and therapeutic swimming with him two times a week at a local aquatic center. Now 14 years old, Jacob does many of the things the doctor said he’d never do.
“They look at the child, they look at the diagnosis, and then they classify them and categorize them based on what they’ve seen with other children in the past,” Walker says. “But they don’t know what your child’s going to do, and they don’t know what kind of influence you’re going to be on your child’s life.”
Joanne Wechsler of Jericho, Vt., looks for a physician who takes the time to talk with her and her husband about their 11-year-old son Adam, who has DMD. She says they’ve dealt with physicians in the past who were arrogant and who talked more “at” them than “with” them, and that it made for an intolerable situation that was remedied by switching to a new doctor.
Wechsler also says she wants physicians who are receptive to her sending them articles on current DMD research.
“I know they’re on top of it,” she says, “But I want to be sure they’re also on top of my kid.”
What it all comes down to, Wechsler summarizes, is that “Doctors have different philosophies, and so do parents.” To develop the strongest, most productive relationship between the two, it’s necessary “to have a good fit.”
“Families have a role to play in good health care outcomes as well as physicians,” says Julianne Nickerson, family faculty director for the family health information and education center Parent to Parent of Vermont.
Nickerson says parents must communicate openly, as the information they provide aids physicians in making good decisions. They also should question physicians’ plans or recommendations if they don’t make sense.
She suggests providing data and finding ways to be concrete, not vague, about issues they’d like to discuss. For instance, parents shouldn’t tell the doctor “he seems weaker to me,” but rather, “he’s unable to walk as far as he could last year.” If unsure about how to track something, Nickerson advises parents to ask the doctor for guidance. Solid data helps physicians gauge both how serious an issue is and how concerned the parents are about it.
Parents should avoid coming to a visit “with preconceived notions, as the provider can sense the negative feelings,” advises Russell Saneto, associate professor of neurology and adjunct professor of pediatrics at Children’s Hospital and Regional Medical Center at the University of Washington at Seattle.
That said, Saneto admits there may not be an easy solution to this sort of problem.
“Sometimes I don’t think parents are aware of the problem,” he says, noting that sometimes parents tell the physician bad stories about other doctors, or that they’ve been on the Internet and are sure X disease is what their child has. Sometimes parents are upset the doctor hasn’t read the child’s medical chart, which never arrived from medical records. “At other times, it’s just a poor match — aggressive parents and a physician who is behind that day as the previous patient has come late.”
Parents should take stock of their attitudes before going to an appointment. Acknowledge problems from the past, along with what you perceive to be the causes and how they might be solved or avoided in the future. Bring up concerns with your child’s physician with the aim of working toward a solution, not placing blame, and remember that cooperation and a pleasant attitude will smooth the process all the way around.
Saneto says it’s important that parents make sure they understand what the doctor tells them, especially with regard to treatment options, as “there may be very valid reasons for the selection of treatment, and the parent needs to listen to why the treatment is being recommended.”
It may be helpful to restate what the doctor says in your own words, ask questions for clarification, and, if you’re still confused, ask the doctor to use pictures or diagrams or to explain it another way.
Saneto also recommends parents bring written questions to exams. (Prioritizing questions in order of importance ensures parents will get to the most important questions first, in the event they run out of time.) Also, if parents go to the Internet for information, Saneto says, they should print out the information for the physician to read.
Leslie Morrison, pediatric neurologist and director of the pediatric MDA Clinic at the University of New Mexico, advises parents to learn as much as possible about their child’s disease and to ask about current research at every doctor visit.
As an aid to understanding and communication, Morrison suggests parents “prepare an organized notebook with test results, consultations, doctors names and contact numbers.” Write down who to contact for various needs (coordinator, nurse, primary care physician, neurologist, consultant, therapist, etc.) and the best way to reach them (phone numbers, secretaries, e-mail).
Morrison urges parents to “think in terms of long-term relationships with your child’s doctors, educators and therapists so everyone works as a team.”
Sometimes, even though they don’t believe they’re getting the level of care they require, people feel compelled to stay with a doctor out of respect for shared history or fear of hurting their physician’s feelings. Others simply are unwilling to expend the effort involved in finding a new doctor and establishing another relationship that may turn out to be no better than the one they’re ending.
But settling — at least most of the time — isn’t the answer. The exception may be in cases where, for instance, a physician’s less-than-perfect bedside manner is forgiven in light of his or her specialized knowledge in an area of critical importance for the family.
Even then, however, as Nickerson says, “If families have a bad experience in health care, they do have options.”
"Sometimes talking it out with a doctor when you’ve had a bad experience can strengthen your relationship," Nickerson says, adding that this also can result in changes to an ill-functioning system that the doctor doesn’t realize exists because no one has ever brought it up.
Another option is to switch doctors. Wechsler advises parents to "shop around" by asking other parents for recommendations, checking Internet listservs or forums associated with organizations that advocate for special needs children, and interviewing potential new doctors to be sure he or she will be right for you.
Whether parents choose to work out problems with their existing doctors or start fresh with someone new, it's imperative they settle into a relationship with someone they trust and who recognizes the special needs of their child and family.
From there, parents must do their part and physicians must do theirs; only by working together can the best outcomes be achieved.
To help children’s doctor visits go smoothly, Leslie Morrison, professor of neurology and pediatrics at the University of New Mexico in Albuquerque, advises parents to:
Morrison says parents should avoid: