Atul Gawande: “Letting Go: What Should Medicine Do When It Can’t Save Your Life?”

Summary: In the August 2 issue of the New Yorker, Boston surgeon Atul Gawande writes about the ambiguities that plague end-of-life care.  With the candor that makes his writing both so credible and so moving, he acknowledges that, as a physician, he too has great difficulty “letting go” of a dying patient. 

Ultimately, Gawande suggests, the problem with the way we deal with death today is that we have forgotten the art of dying.  Palliative and hospice care can help us recover a lost art, he adds, though not quite in the way most of us expect.  The goal is not to cut costs and curtail suffering by shortening the process of dying. In fact research shows that those who receive hospice or palliative care often live longer than other patients.

The aim of hospice and palliative care is to help patients “have the fullest possible lives,” during their final weeks or months, Gawande explains. “That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.” 

Diagnosis Without Treatment: The Perils of New Tests for Early Alzheimer’s Disease

 In April, an independent panel established by the National Institutes of Health came to the disheartening conclusion that currently, there is nothing to prevent or delay the progress of Alzheimer’s disease in those of us who are destined to join the 5 million Americans currently suffering from this dreaded ailment.

The panel  found that: “Although numerous interventions have been suggested to delay Alzheimer’s disease, the evidence is inadequate to conclude that any are effective.” Members rejected scientific evidence supporting the influence of nutritional supplements, herbal products, dietary factors, pharmaceuticals, medical conditions or even environmental exposures on the risk of contracting Alzheimer’s.

Now, just three months later, it turns out that there are big developments in the Alzheimer’s field—just not in new treatments. At a conference in Honolulu sponsored earlier this month by the National Institute on Aging and the Alzheimer’s Disease Association, researchers from three working groups announced that by using new imaging technologies, genetic testing, and tests of blood and cerebrospinal fluid, it will soon be far easier to diagnose Alzheimer’s— in some cases decades before symptoms have even appeared. These new tests are able to identify so-called biomarkers—amyloid plaques in the brain, genetic variants, proteins and other substances in body fluids—that signal a newly defined "pre-clinical" stage of Alzheimer's, when an individual has no symptoms but has positive biomarkers for the disease.  

The Best of the Health Care Blogs, Despite the “Dog Days of Summer”

Summary: Once again, Health Wonk Review offers a round-up of many of the most intriguing and informative health care posts that appeared during the preceding two weeks. Julie Ferguson, of Workers Comp Insider, http://www.workerscompinsider.com  hosts the most recent edition. She begins with an eloquent riff on the “dog days of summer,” July 24-August 24, a span ancient Romans described as an evil time, “when the seas boiled, wine turned sour, dogs grew mad, and all creatures became languid, causing to man burning fevers, hysterics, and phrensies.”  Ferguson suggests  that the description captures not only this summer’s heat, but the ongoing debate over health care reform.

She then goes on to do a splendid job of highlighting rich, thought-provoking posts that bloggers have managed to pen recently, despite the maddening heat. Below, I offer just a short summary of some of these pieces, along with my commentary. To read the posts in full, go to Ferguson’s Health Wonk Review  http://www.workerscompinsider.com/2010/07/-like-much-of-t.html where you will find links to each post.

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On Managed Care Matters, Joe Paduda congratulates "Several large health insurers [that] have decided it's time to get serious about managing costs. They're introducing plans with limited provider networks and either no coverage for out of network providers or high deductibles and co-insurance/co-pays. The plans, introduced by United Healthcare, Aetna, Wellpoint and others, are currently only available in a few markets as the health plans test market receptivity." 

50,000 to 90,000 American Women Incorrectly Diagnosed with Breast Cancer Annually-- A Story in the NYT That Women and Their Doctors Should Read

As regular Health Beat readers know, over the past three years, Naomi Freundlich, and I have written about the risks as well as the benefits of mammograms more than once on this blog. Nevertheless, I want to call attention to an outstanding New York Times story by Stephanie Saul that appeared on the front page of the Times Wednesday, July 19, taking an in-depth look at what can only be called a medical tragedy.  

Saul tells the tale of women who lost all or part of a breast, and in many cases suffered through radiation, for absolutely no reason.  This could happen to anyone. One of these women was a nurse.

5 Myths and Facts about Medicare — In Pictures

Summary: Not long ago the Medicare Payment Advisory Commission (MedPac) came out with a data book on Medicare spending. The information is condensed into tables and charts.  As I looked at the charts, I found some surprises. Below, myths and facts about:

• how hard it is for Medicare patients to find a doctor
• where most of our Medicare dollars go
• increases in Medicare payments to physicians-- and whether doctors automatically hike the volume of services they provide when Medicare cuts reimbursements for services.
• hospitals losing money on Medicare patients
• which hospitals make a profit on Medicare, and which hospitals cannot break even on Medicare reimbursements

A Response to Cato’s Reply: Pollster.com Shows Disapproval Fading As Americans Learn More about Health Care Reform

The Cato Institute’s Michael Cannon has replied to Part 1 of my response to Cato’s report on the Patient Protection and Affordable Care Act (ACA) .You’ll find his reply here. Unfortunately, the Cato Institute website doesn’t have a space for comments, so I decided to respond here, on HealthBeat.

First, let say that Cannon’s reply is both civil and gracious. Thank you, Michael Cannon. I’m hoping that this debate will move forward as I continue to write about the rest of the Institute’s recent white paper, “Bad Medicine: A Guide to the Real Costs and Consequences of the New Health Care Law.” This seems to me a good opportunity to have an intelligent, rational dialogue about reform, comparing facts, while laying out two very different points of view, calmly and clearly.

A Reply to the Cato Institute’s Report on Healthcare Reform - Part 1

This week, the Cato Institute released a 52-page report on health care reform titled: Bad Medicine: A Guide to the Real Costs and Consequences of the New Health Care Law.

The tract was written by Michael Tanner, a senior fellow at the Institute, and it rests on the thesis that the Patient Protection and Affordable Care Act (ACA) is both Unaffordable and Unfair. Inevitably, Tanner’s claims about affordability are shaky; in truth no one can project how much reform will cost over ten years—and how much it will save. There are too many variables involved. Nevertheless, Tanner seems sure: the legislation will add to the deficit, he asserts, and force insurance premiums higher. Moreover, he stamps the legislation “unjust”: it would turn private insurance companies into regulated “public utilities,” forcing them to insure sick people, while “redistributing income” from families earning “over $348,000” to families earning “$18,000 to $55,000.”  Ultimately, he argues, reform represents yet another step toward transforming the U.S. into a “Nanny State.”

Obama's National AIDS Plan Is Short on Funding For Most Vulnerable

This week the White House unveiled its new national plan to cut HIV infections and curb the AIDS epidemic. The plan, the first ever since AIDS emerged on the scene some 30 years ago, has the goal of  "intensifying HIV prevention efforts in communities where HIV is most concentrated;” specifically in the gay and African-American communities who are disproportionately affected by the disease. It also aims to increase access to treatment and mount "a more coordinated national response to the HIV epidemic."

Some specific goals from the National AIDS Plan include:

• Reduce new infection rates by 25 percent by 2015.
• Devote $30 million from the health care reform law to reducing infection rates.
• Link 85 percent of those who are HIV-positive to care within three months of being diagnosed.
• Provide $25 million in funding to help states pay for drugs to treat HIV

This plan, which took 15 months to draw up and included input from 14 community forums around the country, is a good start and helps put the fight against AIDS back on the national radar. Some 1.1 million Americans are currently infected with HIV and infection rates haven’t budged since the mid-1990s. After hitting a peak of 130,000 new infections a year in the 1980’s, the rate dropped to 49,000 a year in the early 1990’s, according to the Centers for Disease Control. But in the past decade this number has increased and remains at 56,000 new infections each year. Meanwhile, in 1995, 44% of Americans indicated that HIV/AIDS was the most urgent health problem facing the country; in March 2009 that number had plummeted to only 6%.

Electronic Health Records, Patient-Centered Care, and Regina Holliday

Today the Department of Health and Human Services announced what criteria doctors and hospitals will be required to meet if they want to receive payments to help buy the Health IT needed to computerize patients’ medical records.  Under the HiTech Act’s incentive program, Medicare and Medicaid will be giving out some $27 billion over the next ten years. The program begins next year.  A doctor can receive up to $44,000 under Medicare and $63,750 under Medicaid, while a hospital can receive millions of dollars, depending on its size. (Starting in 2015, hospitals and doctors will be subject to financial penalties under Medicare if they are not using electronic health records.)

The rules boil down to this: providers who want to be eligible for incentive payments will have to show that they are making “meaningful use” of electronic health records (EHRs)—i.e., that they’re not just using them to  expedite billing , but that they’re using EHRs to improve patient care.

For example, under the final rules doctors will be expected to transmit more than 40% of their prescriptions electronically, hospitals must be able provide more than 50% of patients who are discharged with an electronic copy of discharge instructions if they request it, and providers must produce an electronic copy of a patient’s medical  record within three business days to more than 50% of patients who request it. Click here for a summary of all of the rules.

Regina Holliday appeared at today’s announcement to stress just how important patient access to a medical record can be. Below, she tells the tale of what happened to her husband, Fred, after he was diagnosed with Renal Cell Carcinoma and hospitalized.

What is striking about her story is that Holliday is not complaining that the hospital didn’t “save” her husband. She is objecting to how little information she and her husband received: “the terror of not being told what was going on.” In other words, this is less about what treatment he did or didn’t receive than it is about how he was treated. Holliday is calling for “patient-centered care” that includes the patient in the decision-making loop, giving him the information he needs to make an informed choice.

This piece originally appeared on Regina Holliday’s Medical Advocacy Blog in October of 2009 where it was titled "Thoughts on Medicine and Social Media."   Many thanks to THCB’s Matthew Holt who cross-posted Regina’s story in October, and wrote about her appearance at today’s "meaingful use" announcement. Holt describes her as “the poster child for why access to health data matters to ordinary people," adding: “we need to get her from the world of webinars, Health 2.0 Conferences and HHS announcements onto Oprah and the 6 O’Clock News right now.”

I agree, which is why I’m posting her story here on HealthBeat. (It's not Oprah, to be sure, but unlike the 6 O'Clock News, at least I can give her more than a soundbite.)

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Thoughts on Medicine and Social Media  

On March 27 my husband, Fred Holliday, was diagnosed with probable  Renal Cell Carcinoma (RCC) . Within one day, I became an e-patient, a caregiver and a medical advocate. I would use the internet for both research and patient/family support. To help my husband receive the best care, I surfed the internet at night; researching his cancer using Google, reading the Wikipedia entry on RCC with all of its links, and finding personal cancer stories. Facebook  became the information source on Fred’s medical status. I would take a few minutes each night to post to the 100 plus people following Fred’s care. Within days of diagnosis, two of my friends had set up a  "Lots of Helping Hands"  account. This online network, which rapidly grew to 150 volunteers, would fundraise and provide meals, babysitting and groceries. This pool of helpers was immensely diverse. Before sites such as Lots of Helping Hands, orchestration of a volunteer effort this complex would not have been possible.

Page-Turners: Summer Reading

Over at “The New Health Dialogue,” New America Foundation’s Joanne Kenen offers a reading list for health care aficionados. Let me be clear: she’s not talking about wonky books, but books you might read while “curled up in a giant swinging chair in the back yard.”

First, Melissa Fay Greene’s There is No Me without You. “It’s long,” Kenen writes, “about 450 pages -- and worth every minute. (With limited time -- I bought and read the print version when I could and listened to a library CD version in the car and the kitchen). It’s the story of one Ethiopian widow's attempt to save the AIDS orphans in her country. All of them. Moving and fascinating. Probably my favorite narrative nonfiction book since I read The Spirit Catches You and You Fall Down.”