On Deaths in the New York City Triathlon, and Pushing Ourselves to Limits

Yesterday some 3900 people swam, biked and ran in New York City’s 11th annual triathlon in what might be a celebratory event of human strength and perseverance.

According to this morning’s paper, a 40-year-old woman suffered a heart attack during the 1500 meter swim in the Hudson. She was hospitalized and said to be in stable condition. A man, aged 64, became unconscious mid-way through the swim and was pronounced dead. The man’s death was the second in the history of NYC’s triathlon; three years ago someone else didn’t make it through the water segment.

In March, 2009, the LA Times ran a piece on Death by Triathlon. Most who died in triathlons were men between the ages of 35 and 55 years. Most of the deaths occurred during the swimming portion of the race.

Triathlon (Wikimedia Commons image)

At the pool where I swim, I see people training for the triathlon, and I admire them.

Still, you have to wonder, do people not know their own limits? Or do they choose to ignore them?

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Implications of the Oncology Drug Shortage

Today’s New York Times features an op-ed by Dr. Ezekiel Emanuel, on the oncology drug shortage. It’s a serious problem that’s had too-little attention in the press:

Of the 34 generic cancer drugs on the market, as of this month, 14 were in short supply. They include drugs that are the mainstay of treatment regimens used to cure leukemia, lymphoma and testicular cancer.

Emanuel considers that these cancer drug shortages have led to what amounts to an accidental rationing of cancer meds. Some desperate and/or influential patients (or doctors or hospitals) get their planned chemo and the rest, well, don’t.

Unfortunately, what’s behind this harmful mess is neither a dearth of ingredients nor unsolvable problems at most of the manufacturing plants. Rather, the missing chemotherapies are mainly old and inexpensive, beyond their patent protection, i.e. they’re not so profitable, and not high-priority.

Emanuel proposes that the prices of old oncology meds – drugs that can cost as little as $3 per dose – be raised so that the companies will make it their business to provide them. This seems like a reasonable idea, although I find it a bit too compromising. Why should we raise the costs of any medications above what’s necessary for their manufacture and distribution?

The underlying problem is that we rely on a profit motive to deliver needed health care in the U.S. This kind of financial incentive, even if you find it morally acceptable, doesn’t seem to be working.

That’s why I favor scrapping the system – in which insurance companies siphon off some 30 percent or so of expenses, and pharmaceutical companies take another big cut – and giving patients the care they need, profits aside.

The health care reform bill of 2010 didn’t go far enough. Not even close.

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On Reducing Cancer Care Costs by Resetting Expectations, and Hope

Today we should move forward on the list published in the NEJM on Bending the Cost Curve in Cancer Care. We’re up to point 7 in our discussion, what’s 2nd in the authors’ proposed changes in attitudes and practice: “Both doctors and patients need to have more realistic expectations.”

This point follows closely from the previous, that doctors need to talk with patients earlier on end-of-life issues. But the central issue here is that most patients with cancer are unrealistic about their prognosis, and that oncologists do a terrible job in correcting their misperceptions:

…According to one recent study, most of the patients with lung cancer expected to live for more than 2 years even though the average length of survival is about 8 months.3

Resetting expectations will be difficult. Tools are available to help the oncologist provide truly informed consent by sharing anticipated response rates, chances of cure (always near zero for patients with metastatic solid tumors), and side effects…Many oncologists do not have these skills,43 so use of a decision aid may help…

What they’re describing amounts to Lake Wobegon effect, from the patient’s perspective, and that may be fair enough.

But I think these authors are letting oncologists off easy. Why it is that they lack “these skills,” i.e. what it takes to help patients face reality? It happens yesterday I was reading Dave deBronkart’s book, How to Laugh, Sing and Eat Like a Pig, on his experiences as a patient with metastatic kidney cancer, and he cites a terrific, pertinent excerpt in Dr. Jerome Groopman’s The Anatomy of Hope:

Hope, unlike optimism, is rooted in unalloyed reality. …Hope acknowledges the significant obstacles and deep pitfalls along the path. True hope has no room for delusion.

Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them. For all my patients, hope, true hope, has proved as important as any medication.

Groopman’s point is that real hope rests in reality.

Going back to the NEJM piece –

I don’t think oncologists need (or better, should need) decision aids to help them reset patients’ unrealistic expectations. What they need is time, and thoughtfulness, and the capacity to be genuinely empathic.

If our health care system promoted trusting, and ideally longer, relationships of cancer patients with their physicians, patients would be less fearful of hearing the truth, and their doctors would be less afraid to speak honestly with them. This would reduce cancer care costs by lessening futile treatments, and would improve the quality of the patient-doctor relationships in oncology, besides the quality of care, in itself, and patients’ experiences as they near the end of life.

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About this Week

Dear Readers,

It’s a quiet, warm and breezeless day here in Manhattan.

I’ve been at the hospital for much of the time lately, visiting with my Dad. Being there brings back all kinds of memories. I could write an essay about it, in a flash, but I don’t feel like doing so, so I won’t.

Not an easy week.

All for today,

ES

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Cathy Swims and Runs in Episode 6, Season 2 of the Big C

I almost liked the latest installment of the Big C. Cathy swims, for starters. I could relate.

She’s wearing goggles, no less. That’s universal “code” for seriousness about swimming, or acting. She swims well and pretty fast. Within seconds she befriends the competitive girl-swimmer in the next lane and, wouldn’t you know it, the girl’s team needs a new coach.

Cathy, who is undergoing treatment for Stage IV melanoma in a clinical trial about which the audience knows 0, steps in to coach the team. She meets some resistance from parents who worry about her condition and associated unreliability. She alludes, vaguely, to her rights as a cancer patient and firmly vows to lead the team.

“I can do it” is this episode’s message.

After some ups and downs, and after the viewer suffers from the director’s crude decision to mix the patient’s possibly having a pelvic rash as a side effect with her learning that she has crabs, aka pubic lice, Cathy goes running with the swim team members.

Cathy runs with the team in Showtime's 'The Big C'

How often can a metastatic cancer patient in the midst of serious systemic (meaning non-surgical, not focused radiation or minor) and non-hormonal cancer treatment run with athletes 25 years younger? Only on TV, or in very, very exceptional cases.

Some basics, please: How about feeling tired? Or a relevant rash?

A dose of reality might help this TV program that’s said to be about cancer, or life with cancer.

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What is a Cybrarian?

ML learned a new word on Twitter last week:

cybrarian: “a person whose job is to find, collect, and manage information that is available on the World Wide Web”

My source is the on-line, ever-handy Merriam-Webster dictionary.

(H/T to Dave deBronkart, who sent the term flying across cyberspace.)

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NIH to Drop Requirement for Websites Disclosing Researchers’ Ties to Industry

sunshine image

Today’s word comes from Nature News that the NIH is dropping a proposed requirement for universities to disclose researchers’ financial ties to industry on websites. This is a loss for patients, who may not be aware of their doctors’ relationships with pharmaceutical companies and others who fund clinical trials, fellowships, conference junkets and other perks for physicians.

In 2010, NIH Director Francis Collins wrote: “As the nation’s biomedical research agency, the National Institutes of Health (NIH) must ensure that the research it funds on the behalf of US taxpayers is scientifically rigorous and free of bias.”

This sounds right to me, as it did to the folks at the health and safety arm of Public Citizen, according to the Nature report:

…a cornerstone of that transparency drive — a series of publicly accessible websites detailing such financial conflicts — has now been dropped. “They have pulled the rug out from under this,” says Sidney Wolfe, director of the Health Research Group at Public Citizen, a consumer-protection organization based in Washington DC. “It greatly diminishes the amount of vigilance that the public can exercise over financially conflicted research being funded by the NIH.”

As explained in the article, the proposal came about after evidence came to light that prominent NIH grant recipients had failed to inform their employers (universities and medical schools) about lucrative payments from companies that may have influenced their research. The problem now comes, in part, from lack of funding: the White House Office of Management and Budget (OMB) has no way to enforce the requirement.

That’s no surprise. But it turns out that academic groups lobbied against the requirement. According to the Nature News piece, the Association of American Universities and the Association of American Medical Colleges submitted a joint statement objecting that a website detailing physicians’ potential conflicts of interest (COI) would be onerous:

“There are serious and reasonable concerns among our members that the Web posting will be of little practical value to the public and, without context for the information, could lead to confusion rather than clarity regarding financial conflicts of interest and how they are managed.”

As a patient and as a physician who’s cared for patients in clinical trials and served on an institutional review board (IRB), I can’t be more clear in my thinking that the public should know about academic (and all) physicians’ ties with industry. Every institution with NIH funding should make this kind of information readily available and clear to patients. Otherwise, the faculty don’t deserve the NIH support they’re receiving for the research, nor do they deserve the public’s trust in their work.

Patients should be able to find this kind of information readily, before they enroll in clinical trials or decide to undergo any elective procedures, and even before they choose the physician who would guide them in health care decisions.

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