WE'RE MOVING!!

My new book, The Bedside Manifesto, is finally out in the world. It's available as a paperback at Amazon and as an e-book at Amazon, Barnes & Noble, and if you want to support independent bookstores, Kobobooks.

Of course, as an incurable ranter I'll continue this blog. But I'd rather it be a conversation with you, since I get tired of hearing my own voice. Some readers have told me it's difficult to post comments here, and they're right. Even I have trouble with that, and blogspot.com offers no help for it.

SO AS OF TODAY, WE'RE MOVING THE WHOLE SHEBANG TO BEDSIDEMANIFESTO.COM. The site will include the blog, information on the book, and contact capability. It's in its infancy, so you might find a few blips here and there, but please know I'll steadily be tweaking it toward user-friendliness. Thanks for riding along so far, and now arriba y adelante!

HEALTHY SHOPPING

We Americans tend to think of poison as immediate. I remember seeing BT Collins, Director of the California Conservation Corps, drinking a beaker of malathion in the 1980s to demonstrate his belief that it was safe. Sure enough, he didn’t double up and fall over.

The fact is that many carcinogens and other toxins work their damage slowly, over decades or even entire generations. So when Monsanto flaks declare Roundup “safe,” I don’t believe them, and also doubt their pronouncement that their genetically modified food ingredients are safe. Since we don’t—and can’t yet—know the long term effects of these products, they should at least be labeled so we can make an informed choice.

A move to label, California’s Proposition 37, was defeated in the last election, thanks to the megabucks Monsanto and its corporate accomplices pumped into TV ads. The bad news is that the electorate’s easily hypnotized. The good news is that we have access to something more powerful: the marketplace.

A. C. Gallo, president of Whole Foods, recently announced that the huge chain will require labeling of all genetically modified foods sold in its stores.

This policy, he said, came in response to consumer demand. “We’ve seen how our customers have responded to the products we do have labeled. Some of our manufacturers say they’ve seen a fifteen percent increase in sales of products they have labeled.”

In other words, we may not need to seek legal recourse if we simply shop intelligently by limiting our purchases to foods labeled “No GM ingredients.”

WHAT DO WE MEAN BY “EVIDENCE-BASED”?

My friend Matt sent me an interesting article from lymedisease.org, written by its CEO, Lorraine Johnson, JD, MBA. You can find it at

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-patient-centered-medicine-and-lyme-disease.html.

Many Lyme patients believe that diagnostic guidelines have been corrupted by industry conflicts (diagnostic tests, vaccines, and insurance) and researcher self-interest. This occurs elsewhere in healthcare, too, which is why there’s a growing interest in “evidence-based medicine,” or EBM. Makes sense, after all. Every sane person would favor a medical style based on research that promises, as its proponents state, to integrate the “…best research evidence with clinical expertise and patient values.”

Trouble is, though, that patient values are frequently overlooked despite any lip-service to the contrary. This happens not from malign intent, but because patient experience is necessarily subjective, so not amenable to scientific measurement. 

Lorraine Johnson writes, “…we need to know how patient values are taken into account. Are patients involved? Whose values and viewpoints are represented?” She mentions that this concern is shared by the Institute of Medicine, along with newly emerging organizations established under healthcare reform, like the Patient Centered Research Outcomes Institute (PCORI), with its budget of $350 million.

So please, when we hear the term “evidence-based,” let’s ask if the evidence includes the person who happens to be sick.

REFUSE TO GIVE CPR?

By now you’ve probably heard of the debacle at Glenwood Gardens retirement home in Bakersfield, CA last week, in which 87-year-old Lorraine Bayless died after no one offered her CPR when she’d collapsed. The 911 dispatcher pleaded with people at the home, including a nurse, to resuscitate the woman, but was told that giving any medical help was against company policy. By the time EMTs arrived, Ms. Bayless was unrevivable.

Outrageous, right? But the story bears twists and turns that give one pause.

For one thing, Brookdale Senior Living, which owns the facility, initially said its employee acted correctly by waiting until emergency personnel arrived. Then it issued a new statement saying the employee had misinterpreted the company's guidelines. "This incident resulted from a complete misunderstanding of our practice with regards to emergency medical care for our residents," the Tennessee-based company said.

We don’t know at this point exactly what Brookdale’s policy is, but Ms. Bayless' family said she was aware that Glenwood Gardens didn’t offer trained medical staff but opted to live there anyway. They expressed satisfaction with the care she received, saying her wishes were to die naturally. Unfortunately, though, Ms. Bayless had no “do not resuscitate” order on file.

Meanwhile, according to the Associated Press, Bakersfield police are trying to determine whether a crime was committed when the nurse refused to help even find someone to perform CPR, the Kern County Aging and Adult Services Department is looking into possible elder abuse, and the state Assembly's Aging and Long-term Care Committee is investigating to see whether legislation is needed.

Ms. Bayless herself, of course, would supply the most useful input, but she’s sadly unreachable. This entire misadventure illustrates the train wreck than can occur when there’s less than full and documented communication around dying, a subject that’s evidently still painfully taboo.

INVISIBLE SUFFERING

My new book, The Bedside Manifesto (to be published within the next month), argues that authentic healthcare reform won’t result from any juggle of its economics, only from reviving its center, the venerable “bedside manner.”

I needed to know what other authors were saying, so read piles of books on the subject, almost all written by physicians. Their titles include words I, too, use, like Relationship, Caring, Listening, and Compassion. Yet astonishingly, they’re almost all about diagnosis: pay better attention to the patient and you’ll diagnose more accurately.

Of course, a proper diagnosis leads to optimum physical treatment, and who wouldn’t call that a good thing? Yet none of these good doctors write about patients’ feelings. What’s the shape of their suffering, regardless of diagnosis? How can they be helped to feel better, right now, before any medical treatment?

The authors who do address patients’ feelings are those who work in palliative care. Here, at the apparent end of life, where diagnosis is no longer paramount, comfort is the priority.

Doctors tend to focus on literature within their own field, where there’s plenty to keep up on. To them, palliative care can feel outside mainstream medicine. In fact, end-of-life specialists lament that in the medical mind, a hospice is only somewhere to go to die. While that’s usually true, it’s more, too, as it offers long-sought comfort. A friend of mine who recently engaged hospice services told me, “Finally, no more chemo that makes me sick. The hospice nurses are interested only in me, not my illness. They hear me and keep me comfortable and as pain-free as possible.”

I’d love to see the hospice ethic extend into mainstream medicine. Why shouldn’t every patient with any condition receive this sort of personal attention and comforting? 

LIFE AT ANY COST?

An essay in the Sacramento Bee by Dr. Michael Wilkes, a professor at U.C. Davis School of Medicine (http://www.sacbee.com/2013/02/28/5222449/dr-wilkes-high-drug-costs.html#storylink=misearch#storylink=cpy) posits that pharmaceutical costs are not only going through the roof, but may be rising above the drugs' level of usefulness. He cites a drug used to treat melanoma, the cost of which is $120,000 for four treatments. If the drug succeeds, the patient’s life might be extended a few months. The majority of new cancer drugs cost at least $20,000 for a 12-week course, and often people need multiple courses and multiple drugs.

Of course, Big Pharma contends that drug development is an incredibly costly endeavor without no guarantee of return on investment. For a counter-argument, look up pharmaceutical firms’ even more incredible annual profits. A current fact of life is that healthcare is subject to corporate control, period. If you’re going to wait for that to change, don't hold your breath.

One possible resolution may reside in an old Jack Benny joke. A mugger, the story goes, flashes a gun at Benny and cries, "Your money or your life!" There's a pause. The mugger repeats, "I said, 'Your money or your life!'" Benny says, "I heard you. I'm thinking."

If four melanoma treatments for $120,000 might extend my life for four months, I ought to think: is that worth it? Should my family entertain bankruptcy for extending my side-effect-ridden existence for a short time? I'm finding that an increasing number of patients and their families who face this kind of question are opting for gracefully dying. It takes courage to fight, and it also takes courage to submit. As we become more sophisticated philosophically, life-at-any-cost looks less acceptable, and we become better shoppers.

MENTAL HEALTH DISORDER: GOING ALONG TO GET ALONG

Tonya Battle, an African-American nurse at Hurley Medical Center in Flint, Michigan, claims a note was posted on a nursery assignment clipboard reading “No African-American nurse to take care of baby.” Ms. Battle has sued, seeking punitive damages. The hospital’s president explained that the father bore a swastika tattoo, which concerned supervisors about the staff's safety.

This being the United States in the twenty-first century, whoever received the father’s request should have bellowed, “Dude, even the state of Mississippi just ratified the Thirteenth Amendment. You can either accept the nurses we give you or take your business elsewhere.” But no. According to Ms. Battle, the note in question was later removed, but black nurses weren't assigned to the baby's care for a month.

What troubles me about this story isn’t the racial angle as much as the fact that more staff—of any race—didn’t scream bloody murder. We seem increasingly reluctant to take moral stands. Ms. Battle served as Rosa Parks here, but why weren’t more voices raised? The major issue is, I think, deference to authority.

For a realistic and compelling view of this phenomenon, see the recent film “Compliance,” about employees in a fast-food restaurant who humiliate a fellow worker at the behest of someone claiming to be a cop. I guess they weren’t aware of Gandhi’s advice, “Never do the wrong thing, even if the authorities require it.”