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Prepared Patient: Coping With the High Costs of Prescriptions

HBNS Staff
Friday, December 31st, 2010

Prepared Patient Publication LogoWritten By:  Becky Ham, Science Writer
Prepared Patient, is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives here.

Cost-cutting measures are creeping into the medicine cabinet. We split pills in half or take the drugs every other day to stretch our doses. We stop filling the prescriptions for our most expensive drugs. We buy prescriptions from online pharmacies with questionable credentials.

As patients pay more for their prescription drugs — whether it’s through higher insurance co-pays or shouldering the full costs — many people decide to opt out of taking the drugs altogether. But there are safer ways to cut costs than skimping on — or skipping —the medicines you need.

More emergency room visits, severe and uncontrolled asthma attacks, and an upswing in heart attacks and strokes are just some of the poor health outcomes associated with skipping a prescription due to its cost.

For a chronic disease like high blood pressure where the symptoms are not obvious, skipping the drug may seem like no big deal, according to Rebecca Snead, executive vice president of the National Alliance of State Pharmacy Associations.

But, “we don’t want someone who can’t afford a medicine to become someone who can’t afford bypass surgery,” warns John Michael O’Brien, a prescriptions cost expert at College of Notre Dame of Maryland.

Finding Affordable Rx Drugs
  • RxAssist
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  • Partnership for Prescription Assistance
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  • NeedyMeds
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  • SelectCare Benefits Network
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  • Help with Medicare Prescription Drug Costs
    		•
  • New from Consumer Reports: Best Drugs for Less
    		•
     

    That’s exactly what happened with to Karen Merrill, who has heart disease. She felt worse when she stopped taking her prescriptions for a while after her heart attack, “and I ended up back in surgery for a bypass,” she said.

    When patients decide to stop taking a prescription or otherwise alter their doses without informing their doctors, they may put themselves at risk for overdose or harmful medicine interactions.

    “A doctor may think a patient is taking a drug when he really isn’t, and may prescribe another drug when it appears that the first drug isn’t working,” says Michelle Fritsch, a pharmacist and chair of the clinical and administrative sciences department at the College of Notre Dame.

    Savings Plan

    But maybe your insurance doesn’t quite stretch to cover a brand-name antidepressant, or maybe you are stuck in Medicare’s Part D “doughnut hole,” waiting for your annual cap on prescription coverage to roll over. Maybe you have no insurance and no cash to spend at the pharmacy. How should you handle the costs?

    “Every time you fill a prescription, talk to your pharmacist about lowering your drug costs,” O’Brien advises. “Your pharmacist can explain your options and help your doctor choose a medicine that meets your needs.”

    However, “I don’t know about you, but I know I would have a hard time standing in line with my pharmacist and saying, ‘I can’t afford this,’” says Merrill, who now works with the American Heart Association as a survivor-advocate.

    In many cases, insurance companies directly notify pharmacies about less costly options in a class of cholesterol drugs, for instance, or a new generic version of a drug. “And if a generic is available for a drug you’ve been prescribed, you should take it,” O’Brien says.

    People who think generic drugs “are like generic toilet paper” can rest assured that the Food and Drug Administration certifies generic medications as having the same dose, strength, safety and efficacy as their brand-name counterparts, Fritsch says. Free prescription drugs are available for people who can’t afford their medicines through patient assistance programs or PAPs. (See sidebar.)

    Janet Walton, deputy program director at RxAssist, says it’s not always the uninsured or the poor who are seeking help: “People who are underinsured are calling.”

    Merrill sets aside money in a special health savings account to pay for her prescriptions throughout the year, “but come November, December, I’m in my doctor’s office begging for free samples,” she says.

    “Samples aren’t a replacement for continuity of care,” says O’Brien, who notes that irregular use of samples can make it difficult for pharmacists to catch drug interactions. Doctor office samples also tend to be expensive brand-name drugs, not generics, “so if you start on a brand-name drug, you’ll soon get a prescription for a brand-name drug.”

    Snead and others advise against buying cheaper prescription drugs from Canada, Mexico, and other foreign markets. “The incidence of counterfeit drugs is rising exponentially,” Snead warns. Your online pharmacy may be stamped with a maple leaf flag, “but how do you know that the Web site is really in Canada?” she asked.

    Speak Up-and Cut Back

    “One of the questions that I’ve trained my 77-year old mom to ask is, ‘if I get a new medication, which one of these other medications can I stop taking?’” Snead says.

    O’Brien and Snead both recommend a yearly review of all medicines, in consultation with your doctor and pharmacist.

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    Prepared Patient: Need Help With Your Mental Health?

    HBNS Staff
    Thursday, December 30th, 2010

    Prepared Patient Publication LogoWritten By:  Maia Szalavitz, Contributing Writer
    Prepared Patient    , is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives here.

    Even after she left her alcoholic, abusive husband behind, Patrice*, a nurse in Florida, couldn’t summon the energy to keep her house straight, couldn’t sleep.

    Gaia, a children’s book author in Oregon, found herself crying uncontrollably and couldn’t focus. She felt hopeless without knowing why.

    Insomnia and oversleeping, slowed speech, hopelessness, frequent crying and lack of focus — all are symptoms of depression. Overeating or lack of appetite; suicidal thoughts; loss of interest or pleasure in activities and relationships that usually bring joy; anxiety and difficulty feeling pleasure or sustaining positive emotions can occur as well.

    When to Seek Help

     So how can you distinguish depression from sadness – and when does it require professional help? “We all experience ups and downs in life, but that passes,” says John W. Williams, M.D., a professor of medicine and psychiatry at Duke University.

    In contrast, he notes, three important criteria define depression. It must (1) last at least two weeks, (2) include symptoms of feeling low or pleasureless and (3) its symptoms must interfere with the ability to work and live.

    However, before you seek help, “it doesn’t have to get to the point of wondering. ‘Am I clinically depressed?’” says Catherine Monk, an assistant professor of clinical psychology in psychiatry at Columbia University.

    Some people fear being stigmatized for seeking mental health care – almost as if they have done something wrong or are defective in some way that others aren’t. But the brain, just like other parts of our bodies, isn’t exempt from illness. In fact, 16.6 percent of Americans will experience at least one episode of major depression.

    Patrice, who suffered depression following her divorce, resisted seeking help. “In hindsight I realized that my real strength showed through when I did admit I needed to get help,” she says. “You have to let your ego suffer the bruise.”

    Therapist, General Practitioner or Psychiatrist?

    Figuring out where to find help can be daunting. “A lot of it depends on where you feel most comfortable,” Williams says. “If you’ve got a good relationship with a primary care physician that you have confidence in, that’s where I would I start.”

    Primary care physicians (PCPs) can usually rule out physical causes for the problem and prescribe medications for treating depression – and may be able to refer you to a good therapist. Some PCPs even work with therapists and psychiatrists to integrate treatment of mind and body — an approach that improves results, if you can find a group that uses it. Severe depression often requires specialist care. So if symptoms have lasted for years or you have had previous episodes, starting with a psychiatrist makes sense.

    Talk vs. Meds — Or Both?

    Research shows that medication and certain talk therapies are about equally effective — and using both together is better for some (but not all) people. When depression is persistent or recurrent, combining therapy and medication may be preferable. Ethan Gorenstein, an associate clinical professor of behavioral medicine at Columbia University, notes that about 60 percent of people will recover with either option, compared with 80 percent using the combination.

    If you opt for psychotherapy, the two types most supported by research are cognitive behavioral therapy (CBT) and interpersonal therapy. CBT works to change misleading thoughts and perceptions that can drive depression. For example, depressed people often think that if anything goes wrong, it means that everything will collapse. CBT helps them focus instead on what’s actually happening.

    CBT is more widely available than interpersonal therapy, which focuses on a person’s relationships. It can sometimes be hard to find therapists who use either of these techniques in the way that the studies found effective.

    “There are two clear indicators that someone is practicing CBT,” Gorenstein says. “The first is that they are focused on the present and finding thinking and behavioral strategies for coping. What they won’t be concerned with is identifying the cause. If someone is focusing on what led you to be this way as opposed to how you can change, that’s an indication that you are not getting CBT.” Second, CBT doesn’t spotlight your relationship with the therapist, Gorenstein notes.

    Beyond technique, numerous studies have found that what matters most to recovery is whether the patient feels connected to the therapist.

    “The research is pretty strong that about five times as much therapeutic value comes from the quality of the relationship than from any evidence-based practice,” says Eric Goplerud, a professor of health policy at George Washington University.

    Feeling Good Again

    “You aren’t aiming for being less miserable. It’s about being comfortable about being able to experience the good and the bad of life,” Goplerud says.

    As for Patrice and Gaia, both sought and received effective treatment. Patrice responded to a radio commercial seeking subjects for a clinical trial of antidepressants. She took antidepressants for about six months.

    Gaia, too, stopped the medication after a few years of using both therapy and an antidepressant. “I can still dip down,” she says, “But I can get out of it myself a lot quicker and I don’t just stay there. Don’t be ashamed to get help or feel bad,” she says, “Own it and do it.”

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    Prepared Patient: The “Handoff”: Your Roadmap to a New Doctor’s Care

    HBNS Staff
    Wednesday, December 29th, 2010

    Prepared Patient Publication LogoWritten By: Becky Ham, Science Writer
    Prepared Patient, is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives here.

    It could be a broken wrist, or a life-altering battle with cancer, but sooner or later most patients run up against the diagnosis that sends them from their primary care doctor’s care into the hands of a new physician. In medical circles, this transition is called the “handoff” — a casual name that conceals the complications and risks of this journey.

    If you’re a hospital patient, you’re likely to be seen by multiple doctors and nurses who need to know your exact diagnosis, your litany of medications, and instructions for further care. Many hospitals are now adopting strict, standardized procedures for sharing this critical information among your caregivers. But so far, few such standards exist outside the hospital setting.

    Sometimes, the handoff journey is a smooth one. Seventh-grade teacher Pati Hawker found out she had breast cancer from her OB/GYN, who recommended a handful of surgeons, oncologists and plastic surgery specialists and promptly transferred all her medical records to the doctors she chose.”Nothing got lost; it was very smooth, a very painless transition,” she remembers.

    Other times, however, the handoff is a traveler’s nightmare. When Sue Sword found out she had chronic kidney failure, her primary care physician referred her to a specialist at an expensive clinic that did not accept her health insurance. After she asked her regular doctor to recommend someone else, she recalls, “He said, ‘Well, if you don’t want one of the best in the state, you can find your own doctor!’”

    Patients tend to be more satisfied with their care and likely to trust all of their doctors after a successful handoff. But the benefits can be even more tangible. A good handoff can prevent medication errors, misdiagnoses and unnecessary testing, according to researchers.

    Where I Am Going?

    Leahanne Sarlo, a 36-year-old editor, knew her internist had referred her to a specialist to examine her enlarged ovaries, but she got a rude awakening when she called to make an appointment with the new doctor. “I didn’t realize they were sending me to an oncologist until they answered the phone, ‘Hello, Cancer Center!’ I kind of freaked out at that point. I had known I was being referred to a gynecological specialist of some kind, but not that kind!”

    The start of the handoff is like the start of a road trip; it’s important not to leave home until you have a clear idea of your destination. Your referring doctor should be able to tell you exactly why she is referring you to a new doctor and what to expect from the referral, including the possibility of new tests or treatments that will start immediately.

    Richard Frankel, a professor at Indiana University School of Medicine, says he would also ask his regular doctor about the new doctor’s personality. For instance: “Are they open to my asking questions?” and “Are they good at giving explanations?”

    If the feedback on personality is negative, but the recommended doctor “is technically proficient, I would want to know that my primary care doctor will answer these questions [instead],” Frankel says.

    It’s also important to realize that you have a choice in your destination. Sword did go to the specialist recommended by her regular doctor, spurred by his insistence that she was facing a medical emergency. Much later, she discovered another well-respected kidney specialist who took her insurance and was closer to her home. Her regular doctor did not want to refer her to the nearby physician because “he said I wouldn’t have gotten in for a couple of months.”

    “So I came home and called that specialist’s office and they said, oh no, if it’s an emergency, we get you in right away,” Sword said.

    What You Do to Help Your Handoff
  • Bring a list of all your medications, including herbal and over-the-counter remedies, to your first appointment with your new doctor.
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  • Repeat back any instructions your new doctor gives you, to make sure you’ve understood them correctly.
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  • Ask your doctor to demonstrate the use of any new devices he or she may prescribe for you.
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  • If you have a family member or friend who helps take care of your health, bring them to your appointment.
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    (Adapted from AHRQ’s “Healthcare 411 Consumer Insider: Medical Handoffs;” interview with Carolyn Clancy. Available at http://tinyurl.com/y8utg3f)
     

    What Should I Bring?

    Traveling to a new doctor always involves the baggage of your medical record, whether you decide to carry it yourself or send it on ahead. To ensure that relevant test results get there in time for the appointment, it’s probably wisest to arrange to hand-carry those yourself.

    At the very least, your regular doctor should communicate with the new doctor to explain why you are seeking his or her additional care.

    The referral could happen by letter, e-mail or over the phone, depending on your primary care physician’s office procedures and her personal relationship with the new doctors, according to Frankel. “I think a combination of multiple methods probably works best, but there’s nothing like picking up the telephone,” he says.

    However, some doctors are unwilling to call other doctors to refer patients — and it is perfectly legitimate to take the initiative and make the call yourself.

    Choosing a communication channel could be the easy part. Several studies of referral letters suggest specialists are often frustrated by the lack of details about the condition and reasons for referral in these letters. Inside and outside hospitals, “there are lots of occasions when a patient’s care is handed off and there really isn’t any check or balance on whether an incoming physician actually comprehends what needs to be done,” Frankel says.

    If you’re seeing a specialist for the first time, it may not be necessary to hand over your entire medical history. James Lubowitz, an orthopedic surgeon at the Taos Orthopedic Institute in New Mexico, prefers to take his own medical histories with new patients. “If it’s a 70-year old person who’s been going to a family doctor for years and they send over a 100-page chart, that’s not helpful, that’s a burden,” he says.

    But Lubowitz does ask his new patients to bring any X-ray and MRI films so that he can examine them directly, rather than rely on a written report. He suggests that patients copy or borrow these films from their radiologists and hand-carry them to their appointments.

    Back to Square One

    If you’re seeing a specialist for something like that broken wrist, the odds are good that your journey to a new doctor is a temporary, one-way trip.

    “In a simple [referral] case, I might never call the primary care physician back. Quite frankly, I see hundreds of patients in consultation every year, and the amount of time that would take for me and the primary care physician would be taking us away from treating our patients,” Lubowitz says.

    But when a patient’s condition is complicated or chronic, “I do believe that communication with the primary care physician is important to manage a patient over the long term,” he adds.

    Good communication between doctors is vital when those complications arise, Hawker discovered. As she prepared for a double mastectomy and reconstructive breast surgery, her oncologist consulted with her surgeons to make sure her pain medications wouldn’t interfere with chemotherapy or anti-nausea drugs.

    “I was looking at all of them as help … I was very grateful to be going to all these people,” Hawker said.

    RESOURCES

    Coleman, EA et al. “Lost in translation: Challenges and Opportunities for Improving the Quality of Transitional Care.” Annals of Internal Medicine, 141(7):533-6.

    Forrest, CB et al. “Specialty referral completion among primary care patients: results from the ASPN Referral Study.” Ann Fam Med. 2007 Jul-Aug; 5(4):361-7.

    Grimshaw JM et al. “Interventions to improve outpatient referrals from primary care to secondary care.” Cochrane Database of Systematic Reviews 2005, Issue 3.

    Jiwa, M et al. “Measuring the quality of referral letters about patients with upper gastrointestinal symptoms.” Postgrad Med J. 2005 Jul;81(957):467-9.

    Keeley, E. et al. “Peer assessment of outpatient consultation letters–feasibility and satisfaction.” BMC Med Educ. 2007 May 22; 7:13.

    “New study shines light on poor transfer communications.” Healthcare Benchmarks Qual Improv. 2007 May; 14(5):49-52.

    Nissen, MJ et al. “Views of primary care providers on follow-up care of cancer patients.” Fam Med. 2007 Jul-Aug; 39(7):477-82.

    Roy, MJ et al. “Improving Patient Satisfaction with the Transfer of Care: A Randomized Controlled Trial.” J Gen Intern Med. 2003 May; 18(5): 364-369.

    Smith SM et al.” Effectiveness of shared care across the interface between primary and specialty care in chronic disease management.” Cochrane Database of Systematic Reviews 2004, Issue 3.

    Solet, DJ et al. “Lost in translation: challenges and opportunities in physician-to-physician communication during patient handoffs.” Acad Med. 2005 Dec; 80(12):1094-9.

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    Prepared Patient: Sorting Out Medical Opinion Overload

    HBNS Staff
    Tuesday, December 28th, 2010

    Prepared Patient Publication LogoWritten By: Lisa Esposito, HBNS Editor
    Prepared Patient, is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives here.

    When her grandmother experienced a sudden onset of dizziness, slurred speech and facial drooping, Kafi Grigsby found herself in an emergency department waiting room, surrounded by five doctors with four different opinions on what had occurred and how to treat it.

    She recalls: “The ER doctor said it could be a stroke. My grandmother has a blood condition and the neurologist said that a blood clot could have caused a TIA. The hematologist said, no, her blood looked good. The vascular surgeon suggested that her veins were thin, allowing blood to ‘leak’ through. The primary care physician deferred to the neurologist.”

    A recent study from the Archives of Internal Medicine finds that less than half of adult inpatients could even recite the name of at least one the doctors taking care of them.  Yet these same patients and their families must deal with complex situations where specialists’ scopes of practice overlap.

    Where do you turn when the health care team reaches an impasse even as an urgent medical problem calls for decisions and choices that you simply don’t feel qualified to make?

    You might be surprised to learn that sorting out a patient’s complex case is a specific function of several groups of health professionals. Don’t wait for them to find you first — most likely you you’ll have to ‘flag them down’ and explicitly ask for their help.

    “All these doctors with all these scenarios,” Grigsby says. Yet, “we didn’t have any understanding of what happened. None of these reasons they gave, at that time or later, addressed her slurred speech.”

    Grigsby, who is director of communications and public relations for the Center for Advancing Health (of which the Health Behavior News Service is a part), has been involved with health and insurance groups throughout her career. Yet the situation left her and her family feeling frustrated and overwhelmed.

    Health Care “Choreographers”
    These professionals can guide you through a maze of specialists and help unravel complex cases.

    Clinical Nurse Specialist: The CNS is a master’s-prepared advanced practice RN, educated to work closely with patients and families and see beyond the acute care unit and hospital into the bigger system. To get a CNS on your case, speak to the nurse manager or nursing director for the unit or facility.

    “Concierge” Doctor: An ‘extended-care’ warranty of sorts: by signing up for a concierge or personalized medicine practice, you secure navigation services for the day when your condition becomes highly complicated.

    Geriatric Specialist: A geriatrician is a physician with an additional focus on meeting the medical needs of the elderly. The U.S. Administration on Aging offers an Eldercare Locator site for finding local resources: http://www.eldercare.gov.

    Insurer-Based Case Manager: Insurer-based case management is triggered by a physician referral or hospital, acute care or nursing home discharge. A specific diagnosis on a claim can also alert health plans that a case manager might be needed.

    Internist/Family Physician: For complex cases involving multiple specialists, ask your primary care provider for a sit-down appointment, which may lead to a multidisciplinary meeting of the minds. Depending on the insurer, such an appointment may be covered under your health plan.

    Patient-Centered Medical Home: Medical homes strive to make patients “active partners in their care,” with easier access to providers and more information on treatment options. See the Patient-Centered Primary Care Collaborative site at http://www.pcpcc.net/content/about-collaborative.

    Unaffiliated Case Manager: You can ask for a referral from your health care provider.  Local departments of aging and disabilities or health and social services agencies may offer — or refer you to — case management services.

    For an annotated list of professionals who can help in and out of the hospital, see the Web site for AfterShock: What to Do When the Doctor Gives You — or Someone You Love —a Devastating Diagnosis: http://tinyurl.com/bgcrga.

     

    Choosing a Leader

    You may need to look no further for than the primary care physician — if you have one — for help in navigating a perplexing health care system.

    “That’s exactly what a general internist does,” says Sandra Fryhofer, M.D.  “We help coordinate the care. It’s like the captain of the ship. When there are conflicting recommendations from specialists, we speak up.”

    Putting all the pieces of a case together is a serious matter, not a conversation to shoehorn in during a physical examination. “For something complex like that, an appointment is good,” says Fryhofer, who is past president of the American College of Physicians.

    “In acute situations, if someone is having a heart attack, the cardiologist would be in charge and at different times, other physicians take the lead,” Fryhofer says. “But in the whole scheme of things the PCP is the underlying thread holding it all together.”
     
    In the grandmother’s case, the family felt they needed to go in a different direction.

    “My grandmother has private insurance and of course, Medicare,” Grigsby says. “In theory, you would think the case manager assigned to her after the blood disease would help her navigate this situation. [But] we never got a call from her health plan at any point, even after all the costly tests and specialists. You think, ‘Why wasn’t the health plan alerted? Why don’t they call?’”

    Case managers who are affiliated with an insurance company can help coordinate a patient’s care.  However, they are under pressure to make sure that care is cost-effective and to act in the best interests of the health plan. Another route is for patients to seek out an unaffiliated case manager who does not have insurance company ties. The hospital might be able to provide a referral or you could look for local agencies that offer case management services.
     
    It could be that a new breed of medical provider has the edge when it comes to dealing with difficult care challenges. Although “any competent internist should be able to function in that role, as a bit of a choreographer of care,” says Bernard Kaminetsky, M.D., “physicians are very busy to the point of being overwhelmed.”

    Kaminetsky is the medical director of MDVIP, a company of medical practices that provide what most people think of as ‘concierge medicine.’ But “we don’t like the term ‘concierge,’ he says. “It conjures up images of heated towel racks. We call it personalized medicine.”

    To be sure, the $1,500 yearly fees that MDVIP charges pales in comparison with the up to $50,000 fees commanded by high-end concierge or boutique practices.

    With lighter caseloads than the average internist, Kaminetsky says that concierge practices allow doctors more opportunity to read the latest journals, research new protocols and reconcile treatment recommendations — and time is a luxury beyond the reach of internists working 16-hour days.

    “In this type of scenario, a family has to have confidence that there is someone who is coordinating care, looking at specialists’ notes, making tough choices,” he says.

    Yet another option: families might consider a specialist in the care of the elderly to act as the bridge between patient and specialists.

    Ann Mayo, DNSc, is a gerontology clinical nurse specialist. Mostly employed by acute care hospitals, the gerontology CNS “works within the patient sphere, the nurse sphere — and the system sphere,” Mayo says.

    “Ideally the hospital employs CNSs who can intervene early on, but if not, by the time a family calls me and says, ‘we want you to advocate for us,’ they are usually discouraged and they’re getting mad,” says Mayo, who is also a professor at the University of San Diego.

    She says that even among the most well-meaning specialists, communication can become a problem when there’s more than one disease process at play. “Especially with older adults: they’re frail, and they may have several other conditions, like diabetes.”

    In cases where medical wires are hopelessly crossed, “I would pick up the phone and call every one of the providers and say, ‘we have conflicting information; I’m trying to get everybody on the same page here,’” Mayo says. “I would get everybody — including family and patient — together and have a multidisciplinary meeting: ‘Let’s talk about what we know and what we don’t know.’”

    Your Voice in the Discussion

    If no agreement can be reached regarding the next step, “the CNS would refocus the light beam away from those providers and back onto the patient and family and mediate on what they want, finding out what their priorities are and what they would like to do,” Mayo says.

    It’s only natural for doctors to look at cases through the lens of their own specialty, Fryhofer says. “Sometimes you have to weigh risks and benefits. It’s not all black and white, or decisions would be easy.”

    Kaminetsky concurs: “There are very hard decisions, and usually no ‘right’ answer. Some considerations are: Does the health care surrogate know the patient’s wishes? Is there a living will? Specialists may all have their biases, one way or another. No intervention? Aggressive treatment? You need someone to sit down with the family and sort through all these issues.  In rare instances, I’ve gotten hospital ethicists involved in the discussion.”
     
    Sometimes patients turn to the practitioner they trust the most and elect to follow his or her advice.

    “Collectively, as a family, we decided on the vascular surgeon,” Grigsby says. “He was the most thorough, and as a hospitalist [a hospital-based doctor], he could see medical records electronically and firsthand. In the end, we followed the protocol he recommended.”

    Ideally, those adrift in a sea of specialists could find an anchor in a “medical home,” in which patients have access to more treatment coordination and support from a care team. But while the medical home concept is gaining support, it’s a long way from being widely available.

    As it is, patients and families must get involved when doctors disagree, Fryhofer says. “You have to have these kinds of discussions or the patients will be pushed around like little checkers.”

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