The Trouble With Living Wills

According to the American Bar Association’s Commission on Legal Problems of the Elderly, the notion that everyone should have a living will is a “myth.”  

In theory, a living will gives healthcare providers a window on the patient’s wishes regarding end-of-life care, telling caregivers whether he wishes to be resuscitated, intubated, or artificially hydrated.

In practice, doctors who deal with the dying say that such wills rarely capture the complex realities of being critically ill. An article published today in American Medical News quotes Angela Fagerlin, an associate professor of internal medicine at the University of Michigan Medical School and co-author of a study of living wills published in the Archives of Internal Medicine: “There are so many contingencies in medical scenarios that you can’t put them all down in a living will. You’re putting a lot of undue pressure on surrogates to correctly interpret advance directives.”

Even the patient who makes out a will may not know what he wants. After illness and hospitalization, three in 10 patients adjust their views, desiring more or less aggressive care than they previously thought they wanted.  “If patients’ own preferences are so unstable, then how reliable are their advance directives as a guide to what they would have wanted?” AMNews asks.

“People have a hard time anticipating the care settings in which they’ll face decisions in the future,” says G. Caleb Alexander, assistant professor of medicine at the University of Chicago Pritzker School of Medicine. “You can quote Yogi Berra: ‘It’s tough to make predictions, especially about the future'.”

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Can the Media Derail Health Care Reform?

By now you’ve probably heard the calls for speedy action on health care reform during the Obama Administration’s first hundred days. Some prominent observers even say that the President-elect should get the ball rolling during “his first days in office” The possibility of imminent health care reform is certainly exciting, but a word of caution: just because some of us might be ready for health care reform doesn’t mean that the media is ready to cover it properly. And that could have important implications for how reform plays out.

Right now, health care reform is an abstract goal that everyone wants. Excitement and anticipation are high. But as the substantive process of health care reform gets underway, two things will happen: first, ideas will be crafted into policies—concrete plans of action and complex administrative measures—and second, politicians will become involved in the reform process. Policy can get pretty complicated; so the public will rely on the media to help it navigate the ins and outs of the issue. Once politics begins to shape policy discussions—that is, once politicians enter the picture—it’s all the more important to keep the focus on policy, because it’s at this point that policies have a real chance of being implemented. Americans should know their options.

Style Over Substance

Unfortunately, reporters aren’t health care policy experts. In fact, they rarely ever talk about the issue. In a December report, the Kaiser Family Foundation found that, out of 3,513 health news stories in newspapers, on TV and radio, and online between January 2007 and June 2008, health care policy comprised less than one percent of news stories and just 27.4 percent of health-focused stories. Instead of talking about issues like coverage, prescription drug care, costs, or public programs, the media prefers to report on specific diseases and conditions (cancer, diabetes, obesity and heart disease) and potential epidemics (contaminated food and water, vaccines, binge drinking). Together, these two topics comprised 72.6 percent of health coverage.

This is less than ideal. When Congress begins to talk about health reform in earnest, the important news that will affect all of us will be about policy and institutional changes. The media needs to be good at covering this stuff—yet as the Kaiser report shows, news casters, reporters, and editors have very little experience (or interest) in discussing such issues. Worse, history shows that when health care reform efforts are actually underway, the media ignores policy in favor of more sensational stories.

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Health Care Reform–No “Magic Bullets”

Wishful thinking leads many well-meaning reformers to imagine that we can accomplish universal coverage in a single stroke. Writing in the December 31 edition of the New Republic,  political scientist Jacob Hacker suggests that by declaring “healthcare for all” we can achieve universal coverage and , simultaneously,  kick-start the economy.  How do we do it?  Easy—just spend as much money as possible as quickly as possible.

“In fact,” Hacker writes, “we have a magic bullet.”

This sentence stopped me. To my mind, the word “fact” just doesn’t belong in the same sentence with the phrase “magic bullet,” certainly not when we are talking about something as complicated as national healthcare.

Nevertheless, Hacker, who is an intelligent, highly-respected healthcare reformer , is dead serious. Just spread the money around, he says, and everyone will be happy—particularly the lobbyists who might otherwise object to any attempts to cut spending and eliminate some of the waste in our bloated system.

 “Buy off the opposition,” Hacker advises.  “Britain's health minister was once asked how he had gotten doctors on board for the National Health Service. His reply:  ‘I stuffed their mouths with gold.’ Money may not change everything, but it does make it easier to win friends, or at least divide and placate them. . . .”
The problem with the Clinton healthcare plan Hacker explains is that “it didn't include enough handouts to appease interest groups.” 

Still, I cannot help but wonder: Does “stuffing their mouths with gold” mean “stuffing health care legislation with pork”?  Is that really the most prudent way to design an affordable, sustainable, and effective health care system?   

But according to Hacker, Americans don’t want to hear about affordable; nor are they interested in eliminating waste.  “Most don't believe our nation spends too much on health care; they believe they spend too much.” In other words Americans are distressed that their own bills are so high.  The fact that Medicare spending is sky-rocketing, and that eventually we all will have to pay the piper, is, apparently, beyond the grasp of the average citizen.  The notion that unnecessary, often unproven and usually over-priced drugs, devices, tests and operations can be hazardous to our health is just too hard to understand.

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Alzheimer’s Disease: The Basics

Earlier this month newspapers reported that Columbo—that is, actor Peter Falk—has Alzheimer’s Disease. Usually, when news breaks that a celebrity is suffering from a serious medical condition, there’s a flurry of coverage discussing the nature of the disease. Hopefully, the pattern will hold in Falk’s sad case—because Alzheimer’s is both a terrifying disease and a greater public health issue than most of us realize.   

Indeed, the incidence of Alzheimer’s Disease (AD), is rising. According to the Centers for Disease Control and Prevention, in 2006 Alzheimer’s disease was the sixth-leading cause of death in the U.S., killing 72,914 people. Another startling number: Alzheimer’s as a cause of death has skyrocketed in recent years, increasing by 33 percent between 2000 and 2004.

So What Is It?

A progressive brain disorder, AD literally shrinks the brain, eroding individuals’ memory, language, and their ability to coordinate basic motor skills like swallowing, walking, and bladder control. These deficiencies can lead to other serious problems: an inability to swallow can cause food to be inhaled, which can lead to pneumonia; not walking can lead to painful bedsores prone to infection; and incontinence can also lead to infections.

In other words, Alzheimer’s is a frightening disease that gradually can take over the mind and body.  Unfortunately, there is no known cure, and currently no medical tests that allow us to diagnose the disease with 100 percent certainty—doctors need to cut open the brain in order to tell for sure that it’s afflicted with AD.

Further, no one knows for sure what causes Alzheimer’s, though researchers do have some understanding about what happens to the brain during the disease. The culprits are two abnormal structures called plaques and tangles, which together kill nerve cells in the brain. Plaques build up between nerve cells and deposit proteins that impede normal neurological functions; tangles are knots of protein that build up in brain cells and collapse the structures needed to transport vital nutrients across the brain.  

Doctors aren’t entirely sure what causes the growth of plaques and tangles. Genes might play a role, but researchers don’t know just how—or how much—they matter. That’s due in part to the fact that Alzheimer’s, when it’s genetic, is not caused by a single gene, but rather mutations on multiple chromosomes. Sadly, this information is not as useful as it may seem: according to the National Institute of Aging (NIA), less than 10 percent of AD patients have “familial Alzheimer’s”, i.e. a genetically inherited form of the disease. Onset of familial AD is early, before the age of 65.  The other 90+ percent of Alzheimer cases are late-onset (after 65), and according to the NIA, this form of the disease “has no known cause and shows no obvious inheritance pattern.” Researchers have a hunch that genes play some sort of role in late-onset AD, but “only one risk factor gene has been identified so far” and it’s not enough to account for the entire disease.

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Insurers Expand Primary Care: an Argument for Obama’s Plan

Imagine appointments with your primary care doctor that last 30 minutes—or longer. What if you could e-mail her when you need a prescription refill? If you have a two-minute question, she encourages you to call; she or a nurse practitioner will come to the phone. If they’re busy, they’ll return your call within a few hours.

A recent story in the Seattle Post-Intelligencer offers hope for primary care by focusing on an innovative program at Group Health Cooperative, a nonprofit health care system headquartered in the state of Washington. Under the new program, patients see their doctors less often, but when they do, it is a meaningful encounter.  And in between appointments, doctors are paid to communicate with patients in other ways.

A multi-specialty integrated health care system, Group Health, like Kaiser Permanente, provides both healthcare and insurance. Group Health’s doctors work on salary, so there are no financial incentives to “do more.” And because Group Health is both the insurer and the caregiver, the payer and the health care provider are not adversaries: they are on the same team. 

By creating its own small revolution in primary care, GroupHealth is demonstrating that private sector insurers can be part of the solution to our healthcare crisis.  In this case, the key is paying doctors for the time they spend e-mailing patients, returning phone calls, and doing research on their behalf. Because doctors are on salary, they are paid for everything they do—not just for the number of patients they manage to “see” in a given day.

In a two-year experiment, Group Health is encouraging doctors to spend more time in face-to face appointments with patients.  Given the finite number of hours on a physicians’ calendar, this means seeing patients less frequently. But doctors also keep in touch with patients by phone and e-mail.

As a result, a doctor like Dr. Patricia Boika can spend a half hour, or more, with the patient she sees.  Before she became part of this program, “The practice had become a dismal treadmill, with too many patients and not enough time, double-bookings and harried visits, and paperwork lugged home every night,” Boika, who has been a family doctor for 28 years, told the Post-Intelligencer.

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Ezekiel Emanuel Appointed as Healthcare Advisor

This is from the Wall Street Journal’s Washington Wire:

Ezekiel J. Emanuel, a prominent bioethicist at the National Institutes of Health–and the brother of incoming White House Chief of Staff Rahm Emanuel–will serve as a senior counselor at the White House Office of Management and Budget on health policy, two Democratic officials said Thursday. 

“Zeke Emanuel will work closely with Department of Health and Human Services secretary-nominee Tom Daschle to formulate a national health insurance program and to try to curb the swelling cost of health insurance without adversely impacting health care.

“Two Emanuels in the White House might sound like a voluble combination, given Rahm Emanuel’s penchant for yelling, but his brother is known for being suave and soft-spoken”

As regular readers may remember, I’ve written about the plan for universal coverage that Zeke Emanuel outlines in his book Healthcare,Guaranteed in two posts: The first post begins:

“Imagine a proposal for health care reform that guarantees free, high quality health care for all Americans.

"No premiums. No deductibles. Under this plan, the government insists that all insurers offer the same comprehensive benefits to everyone including: office and home visits, hospitalization, preventive screening tests, prescription drugs, some dental care, inpatient and outpatient mental health care and physical and occupational therapy.

“These benefits are more generous than Medicare’s and more comprehensive than what 85 percent of all employers offer their employees. (Individuals who want to purchase coverage for additional services like concierge medicine, experimental drugs for serious conditions, complementary medicines or more mental health benefits could do so.)

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The Future of Pharma

Over the next few years, drug makers are likely to face many new challenges, including government approved importation of cheaper drugs,  Medicare negotiating for lower prices, stricter regulations of direct-to-consumer advertising, and (hopefully) a more robust FDA under the Obama Administration. With so many changes afoot, Big Pharma will have to evolve or suffer the consequences. Even drug executives see the need for a restructuring of the industry. Earlier this month, the head of pharmaceuticals at Roche told reporters that the “marginally-different-and-market-it-like-hell model [of prescription drugs] is over.” But if that’s true, then what new model will take its place—and will it be any less troubling?

Winds of Change

One of the biggest indicators that change is on the horizon is the fact that spending on prescription drugs isn’t what it used to be. In fact, according to a recent Health Affairs article authored by Murray Aitken of the consulting firm IMS Health, Ernst Berndy of MIT’s Sloan school and David Cutler of Harvard, sales are beginning to level off. Though “U.S. spending on prescription drugs grew 9.9 percent annually between 1997 and 2007,” since 2003 “growth rates have declined rapidly”—to their slowest since 1974—“and in 2007 spending grew but 1.6 percent” after growing by 8.5 percent in 2006—the first decline in spending growth on record.

A major reason behind the slow-down is that drug makers are simply running out of new drugs to sell. Aitken et al. note that, “according to the FDA, between 1999 and 2001 the average total number of…new product approvals was about thirty-five per year, whereas between 2005 and 2007 this number fell to about twenty.” And as time goes on, newer drugs comprise a smaller share of drug sales: “Products introduced within the prior five years accounted for 34 percent of total drug sales in 1999” but “that share has declined steadily since then, to just 19 percent of total sales in 2007.”

Fewer new drugs mean fewer new patents, which limits drug makers’ ability to keep revenues high through monopolistic pricing. Over time, the value of brand-name drugs on the cusp of losing their patents—and thus becoming vulnerable to competition from cheaper generics—has almost doubled, “from an average of about $9 billion per year between 2002 and 2005 to about $16 billion in 2006-07.” Health Affairs points out that “the list of drugs losing patent protection in recent years has been substantial: Norvasc (value: $2.6 billion), Lotrel ($1.5 billion), and Flonase ($1.2 billion). Moreover, drugs likely to come off patent protection soon include Cozaar in 2010; Lipitor, Plavix, and Seroquel in 2011; and Diovan, Viagra, and Evista in 2012.

When drug makers lose blockbusters—that is, drugs with sales of $1 billion or more—they take a big hit. A 2004 BusinessWeek article cited a Boston Consulting Group study which estimated that “80% of growth for the 10 biggest drug makers during the last decade came from the eight or so blockbusters a year launched during the 1990s.” Aitken et al. note that “spending on blockbusters increased from about 12 percent of all sales in 1996 to almost half of all sales in 2006, accounting for three-quarters of prescription drug spending growth over the same time period.” Unfortunately for drug companies, blockbusters are on the decline: “in 2007, for the first time, the number of billion-dollar products fell—from fifty-two to forty-eight—and their share of all sales also fell slightly, to 44 percent.” More bad news for pharma: “As more blockbusters go off patent and fewer new ones are developed, the share of sales attributable to blockbuster molecules will likely decline still further.” In other words, drug companies need to find a new cash cow. But where to look?

Toward Specialization

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Irrational Exuberance over Electronic Medical Records?

When President-elect Obama outlined his economic stimulus package earlier this month, he emphasized the need to invest in the healthcare system’s infrastructure by pushing for electronic health records (EHR), nationwide:   “We will make sure that every doctor’s office and hospital in this country is using cutting edge technology and electronic medical records so that we can cut red tape, prevent medical mistakes, and help save billions of dollars each year.”

On the face of it, I like the proposal because Obama is talking about spending money on something concrete, something that we definitely need, and something that, over time, should make U.S. healthcare safer and more effective.  At the end of the day, we’ll have something to point to that is just as substantial as a safe bridge and that, over the long term, should add to the health and the wealth of the nation.  If done right, the pay-off would be better, more efficient care for years to come. And here’s the bonus: a roll-out of healthcare IT would provide jobs for all of the people needed to design the technology and train healthcare providers.  

Still, this is an ambitious undertaking. And there are questions to be asked. So I began asking them. Some of the answers were eye-opening.

Why Don’t We Already Have HealthCare IT?

After all, we spend hand-over-fist in most areas of healthcare: why not here?

The problem is that the physicians and hospitals who the government expected to invest in electronic health records are least likely to benefit financially.  For example, if electronic medical records reduce the number of redundant tests, the insurer and/or the patient enjoy the financial benefit: the physician does not. In fact, if the physician does the tests in his own office, he loses money every time he doesn’t need to repeat a test.  Over time,  health care providers might realize savings from EHRs, but experience suggests that it would take at least ten years.

Since insurers would be the first to enjoy savings from more efficient care, it would make sense for them to provide the initial funding for Health IT. But so far, relatively few for-profit insurers have stepped up to the plate. 

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Physician-Assisted Death in the US

Last month, voters in Washington State voted 58% to 42% to allow physician-assisted death (PAD) for terminally ill patients, making it the second state after Oregon to allow such a practice. In a recent New England Journal of Medicine article covering this development, Dr. Robert Steinbrook notes that Washington’s “Death and Dignity Act…permits…[adult] state residents…with an illness expected to lead to death within 6 months to request and receive a prescription for a lethal dose of a medication that they may self-administer in order to end their life.”

The law, which will take effect on March 4, 2009, is based closely on the Oregon PAD law, which has been in effect since October 1997. Steinbrook points out that Oregon’s legalization of PAD has had some interesting effects—or rather, non-effects—on the number of patients who have exercised their “right to die.” Between 1998 and 2007, “physicians wrote a total of 541 prescriptions for lethal doses of medications…and 341 people died as a result of taking the medications. Thirteen patients who had received prescriptions were alive at the end of 2007, and the rest of [the 541 people] who received prescriptions ultimately died of their underlying disease.”

These are not huge numbers: 341 people over nine years comes out to about 38 terminally ill people per year seeking to end their lives. In other words, PAD has not turned out to be a slippery slope toward mass suicide. In fact, most Oregonians who sought PAD between ’98 and ’07 belonged to a relatively predictable demographic: they were old (median age of 69), suffering from terminal cancer (81.5%), and were enrolled in hospice programs (86%).

This last point is particularly interesting. Steinbrook suggests that a shift toward hospice care within the medical community may be associated with an increase in PAD because hospice care tends to “address many of the key reasons why patients request assistance in dying — such as loss of autonomy, dignity, and the ability to care for themselves in a home environment.” Certainly a growth in hospice care doesn’t necessarily mean that more patients will seek out PAD. But given what we’ve seen in Oregon—and hospice care’s focus on making patients comfortable with the fact that they are dying—a growth in hospice care could very well put more people in a position to do just that.

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HealthBeat Readers in Minneapolis—Let Washington Know What You Think

Randy Schubring of the Mayo Clinic’s Health Policy Center will be hosting a health care  discussion Friday, Dec. 26, at 7 in Minneapolis. Here is his invitation:

President-elect Obama has made it clear that health care reform is one of his top priorities. That's why the Obama-Biden Transition is asking people to give their own thoughts and ideas for how to fix the system at Health Care Community Discussions all across the country.  I just signed up to host a Community Discussion, and I thought you might want to come. Here are the details:

Date and time: Friday, Dec. 26, 7 p.m.

Location: 2530 East 34th Street #108
Minneapolis, MN

Hope you can make it!

Randy Schubring | Mayo Clinic Health Policy Center |  507-293-0966 | schubring.randy@mayo.edu
Mayo Clinic | 200 First Street SW | Rochester, MN 55905 | http://www.mayoclinic.org/healthpolicycenter/

Scroll down to  “HealthBeat Readers, Let’s Get Involved” to find out how you can host a health care discussion in your city.