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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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Health Reform: Elections, Politics and Patients

Lisa Esposito
Tuesday, December 14th, 2010

How much did health reform affect the midterm election results? How, in turn, will those results shape health care as politicians prepare for the 2012 race?

“Polls suggested that health care is an important but secondary voting issue in this election,” wrote Robert Blendon, a professor of health policy at the Harvard School of Public Health. His analysis of 17 independent polls on the role of health care, from the perspective of potential voters, appeared online one week before the election and in a November issue of the New England Journal of Medicine.

In March 2010, Congress passed the Patient Protection and Affordable Care Act after a bruising partisan battle.  Blendon described the competing messages on health care received by the public before and after health reform passed.
 
“The Democratic messages were all about, ‘We have popular provisions; how could you ever not want this bill?” Blendon said. “The Republicans took a completely different route. They didn’t argue that there weren’t some popular things; they argued that the overall bill would have a really bad impact on seniors, on taxpayers, on people who have to buy their own insurance and on the deficit, and that employers weren’t going to hire people because there was so much regulation.”

The jury’s still out on whether Medicare funding changes are ‘cuts’ or ‘savings’ but older voters were convinced of the former.  “The administration’s argument was that wasn’t true at all; these were just savings that wouldn’t affect care,” Blendon said. “But seniors really believed that this bill would lead to Medicare as they know it deteriorating.”

Key Health Reform Components
The Patient Protection and Affordable Care Act became law in March 2010. Voters welcomed some provisions and feared others. Many Americans share confusion about what health reform includes and how it affects them.
Most Popular*
  • Pre-existing Conditions: Insurance companies can no longer deny coverage to children because they already have a medical condition like asthma or diabetes. This protection extends to adults in 2014.
  • Insurance Caps: Insurers can no longer impose lifetime limits on certain benefits. In addition, the law restricts their ability to impose annual caps.
  • Medicare Doughnut Hole: About drugs, not doughnuts: Seniors who reach the Medicare Part D prescription gap receive $250 rebates and a 50 percent discount on covered drugs.
  • Young Adults-Extended Coverage: Young adults can stay on their parents’ plans until they reach age 26.
  • Small Business Tax Credits: Employers can receive credit for up to 35 percent of workers’ health insurance.
  • Preventive Services: The law waives coinsurance and deductibles for most preventive services and Medicare will cover 100 percent of the cost.
Most Unpopular
  • Individual Mandate: By 2014, most Americans must have insurance coverage or pay a penalty. Opponents charge that the mandate is unconstitutional.
  • Medicare Cuts: Seniors’ biggest fear was that the law reduced Medicare benefits and they voted accordingly. Depending on one’s position, funding changes are defined as (1) Medicare cuts, (2) reductions in growth of spending or (3) Medicare savings.
  • Taxpayer Costs: Tax hikes will affect more-expensive health plans and medical equipment, among other increases. Voters worried that costs would be passed on to them.
*Most and least popular items derived from: Blendon RJ, Benson JM. Health care in the 2010 congressional election. NEJM 363(e30), 2010 and from interview with Robert Blendon.

AARP, the national organization for Americans age 50 and above, supports the Health Reform Act although many members—and former members who left the organization in protest of that stance—oppose it. AARP policy chief John Rother said seniors stand to lose if the new legislation doesn’t survive. 

“If it were repealed, seniors would lose very important benefits: assistance paying for prescription medications, the doughnut hole, prevention benefits, long-term care,” Rother said. “The Medicare trust fund was extended by nine years; without [reform] it would be exhausted in just the next few years.”

In March, the Congressional Budget Office estimated that health reform legislation “would produce a net reduction in federal deficits of $143 billion over the 2010-2019 period, as result of changes in direct spending and revenues.”

Ed Haislmaier, senior research fellow for health policy studies at the conservative Heritage Foundation, takes issue with the CBO figures.

Haislmaier said the CBO underrated the “employer-dumping” effect: the number of employers who will drop health insurance coverage, thus increasing the number of people who need subsidies. He also said the agency vastly underestimated the size and pace of the enrollment in the Medicaid expansion after 2014.

Voters by the numbers

In the NEJM analysis, 67 percent of Democrats said they were “more likely to vote for a Congressional candidate who supported the new health care law.” Republicans had the opposite response: 72 percent were less likely to vote for that candidate. Independents were also more negative toward health reform.

It’s difficult to tease out the effect of health reform on individual races, but CNN exit polls show parallels between voters’ views on health care and election results.

In the California senate race, 68 percent of voters who rated health care as the most important issue voted for incumbent Sen. Barbara Boxer (D), who has called for a public health insurance option (which did not make it into the law),  compared with 29 percent for Carly Fiorina, whom Boxer defeated.

On the flip side, in Florida’s governor race, Rick Scott (R)— an early and vocal opponent of health reform —defeated Alex Sink (D), with 85 percent of repeal supporters voting his way.

Although his House seat wasn’t at stake, Rep. John Boehner (R-Ohio) emerged as Speaker of the House. On Nov. 16, Boehner filed a “friend of the court” brief challenging the constitutionality of the individual mandate, as part of the multi-state lawsuit against health reform. Boehner has called for repeal.

A Player in the Movement to Repeal
Tom Nelson, spokesman for U.S. Rep.-elect Rick Berg (R-N.D), calls en route from North Dakota to Capitol Hill. The staff has yet to organize their new office, much less fine-tune the freshman Congressman’s agenda. But one item is clear: Berg intends to do his best to get rid of the new health care law.

Although Democrats retained a slim Senate majority in the midterm elections—and health reform champion President Barack Obama holds veto power in the White House—Berg will stick to his promise to voters, Nelson said.
“The first thing we have to do is repeal,” Nelson said. “We have two Houses and a president. [Berg] would let the process play out.”

 Berg, who defeated Rep. Earl Pomeroy (D), a nine-term incumbent, criticized Pomeroy throughout the campaign for backing health reform.

 

Nelson said Berg supports one or two of the new law’s provisions, although he thinks the changes could have been made through older, existing legislation. “He agrees that the [Medicare] doughnut hole needed to be closed and he supports the Frontier Amendment,” Nelson said. Passage of the Frontier Amendment means more money for rural hospitals.
But a few improvements don’t outweigh the larger legislation’s overarching flaws, Nelson said.  “On something this big, you wouldn’t say repeal unless it was that bad. It was a government takeover of our health care system.”

 
 

Supporters of health reform still have powerful friends in Congress, however.

A key player is Senator Tom Harkin (D-Iowa), not only as an architect of the law but as head of the Senate Health, Education, Labor and Pensions Committee.  He also heads the Appropriations health subcommittee, which oversees funding for the Department for Health and Human services. Harkin repeatedly has said that efforts to repeal or defund health reform will fail.

One such effort already has: the Associated Press reported that on Nov. 29 the Senate blocked repeal of a tax provision to help fund reform.

However, on Dec. 13, the judicial branch weighed in: a federal judge in Richmond, Va., ruled that the individual mandate is unconstitutional, as the Wall Street Journal reported.
 
Alternatives, Anyone?

John Rother has a question for legislators: “If the new majority in the House objects so strongly to savings in Medicare, what is it proposing instead to keep health care for under-65s affordable and solvent as well as for Medicare recipients?”
  
Health law opponents do have alternatives in mind, said Dean Rosen, onetime chief of staff to former Republican Majority Leader Senator Bill Frist, in a Nov. 12 briefing for journalists at the National Press Club.

“There have been a number of Republican proposals, legislative proposals, that are introduced that have insurance reforms and other things that they will point to and I’m sure will reintroduce,” Rosen said.

If the political debate seems to be more about health care costs than medical conditions, that’s actually a fair reflection of the mindset of U.S. health consumers. In a November 2010 Gallup poll, Americans say that access to health care (34 percent) and health care/insurance costs (19 percent) are the most urgent health problems currently facing the country.

Will the new law lead to better health care?

From where he sits at Harvard, Robert Blendon says it will. “Anything that would give millions of people stable coverage, paying for care and preventive services, has an impact on health,” he said. “But at the School of Public Health, people don’t worry about deficits or taxes…. I think everybody in the sort of ‘health world’ thought a bill that covered this many people was an improvement. But the Harvard Business School might have a different view.”

More disease prevention and screening programs will help the uninsured and insured alike, Blendon said, but not necessarily make for a healthier bottom line.

“By having people not die when they’re younger and live 20 years longer, which is such a wonderful victory, they actually use more medical care,” Blendon said. “There is no debate about whether we could push the curve and people could live longer: from a public health point of view, who could not be for people living longer? But there is a debate: 20 years from now, will the health care budget of the United States be lower if lots of people live longer?”

Just two years from now, Americans return to the polls for the big one: the 2012 election. Health reform provisions already in place by then— like free mammograms and colonoscopies (2010), expanding coverage for young adults and early retirees (2010), prescription drug discounts for seniors (2011), and the CLASS Act long-term care insurance program (2012) —probably will have shown some results and gained traction. 

But programs yet to begin could be vulnerable depending on the make-up of Congress and the White House. Funding renewal for the Children’s Health Insurance Program (2013), prohibiting health insurance coverage based on adults’ pre-existing conditions or gender (2014)—and above all, the individual mandate that most Americans must have health insurance or pay a penalty (2014)—might or might not survive to meet their start dates.

“The real battle here is not so much about legislation in the next couple of years,” AARP’s Rother said at the Press Club briefing. “It’s not really about appropriations. It’s a battle for the hearts and minds of the American public…The election that matters will be 2012. We’ll know the answer after that as to what will be the future of health reform.”

 Editor’s Note: This story originated as a project for the graduate journalism program at Georgetown University.

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