Tag Archives: health care

On when to let go

My former colleague, Charlie Ornstein over at ProPublica, wrote a thought-provoking, emotional piece on the costs of end-of-life care. As a health care reporter (one of the best in the business; he was a Pulitzer Prize recipient at the LA Times), he has written a lot about how end-of-life care is often prolonged beyond reason – account for as much as 25% of Medicare payments in the last year of a patient’s life. But when his mother was dying, he writes, “none of my years of reporting had prepared me for this moment, this decision.”

My father, sister and I sat in the near-empty Chinese restaurant, picking at our plates, unable to avoid the question that we’d gathered to discuss: When was it time to let Mom die?

It had been a grueling day at the hospital, watching — praying — for any sign that my mother would emerge from her coma. Three days earlier she’d been admitted for nausea; she had a nasty cough and was having trouble keeping food down. But while a nurse tried to insert a nasogastric tube, her heart stopped. She required CPR for nine minutes. Even before I flew into town, a ventilator was breathing for her, and intravenous medication was keeping her blood pressure steady. Hour after hour, my father, my sister and I tried talking to her, playing her favorite songs, encouraging her to squeeze our hands or open her eyes.

You can read the rest of Charlie’s story here.

Charlie’s piece brought to mind an equally powerful but hard-to-read story written by Atul Gawande for the New Yorker, “Letting Go (2010)

“Letting Go” – The New Yorker’s Atul Gawande, on giving up life to live

Trinity Church Cemetery

Trinity Church Cemetery

Dr. Atul Gawande’s latest New Yorker piece is described as another examination on on what’s behind the cost of health care, but it serves more as a lesson on how to both cope with the finality of death and to appreciate life.

It took me several times to get through it, and luckily I wore my sunglasses in the subway so I wouldn’t look like some snob getting teary-eyed over his iPad.

The opening (and ultimately, closing anecdote) is about an ill-fated patient of Dr. Gawande’s, a Sara Thomas Monopoli, who discovers she has incurable cancer 39 weeks into her first pregnancy. Dr. Gawande describes Monopoli’s long struggle to stay alive, with taking a series of experimental drugs with harsh side effects; at one point, she hides the fact that she’s lost feeling in her hands and had double vision for two months, for fear her treatment would be stopped.

Gawande’s sprawling piece ends up being kind of a travelogue of his journey of accepting death for his patients. He believes, as do most people, that hospice care is meant to hasten death, even though at least one survey of terminal cancer patients found that those who elected for intensive care had similar survived no longer than those who entered hospice care.

As Gawande puts it:

Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.

Gawande relates this to the current health care crisis by pointing out a 2004 Aetna study in which policyholders expected to die within a year could choose hospice services and have all the other treatments. The hospice care was so appealing, apparently, that these patients spent far less time in hospitals and ICUs, even though they didn’t have to give up any options. Costs fell by nearly 25%

The benefits of accepting fate are not just monetary. Gawande writes that by many objective metrics, patients who seriously discussed end-of-life care ended up suffering less:

Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression.

In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.

I can’t think of many other journalists who I respect more than Dr. Gawande. Besides having incredible eloquence as a writer, he’s a respected professional in the field he covers. His book “Complications,” nearly made me quit journalism to try med school – it was that fascinating of a look into how terrifying, yet intellectually challenging, it would be to be an ER surgeon – until I realized it would be a long, uphill slog for someone who never took a college level biology class.

Atul Gawande

Atul Gawande

Gawande has had at least two other notable pieces. One, related to the subject of “Complications,” was how a checklist consisting of steps as simple as reminding doctors to wash their hands was saving a staggering number of patients from post-surgical infections. And the second, about how one town in Texas managed to have the highest, by far, health care costs per capita. The article reportedly caught President Obama’s eye during the health care overhaul.

Both are instructive essays on the complexity of health care. “Letting Go” is less so, perhaps because there are no cost-benefit studies that would convince either death-panel-fearing-Tea-partiers or an insurance-company-demonizers that the health care system would ever be right to compel a patient to give up treatment.

But as a collection of tragic anecdotes, “Letting Go” really shook me and at least made me remember to appreciate what’s good in life. Maybe that’s Gawande’s ulterior strategy all along, to convince the reader to place enjoying life over prolonging it, and by doing so, maybe, get both.

Another New Yorker piece (h/t/ longform.org), written in 2001 by Gary Greenberg, also examines the moving line between life and death, and in particular, how where the line is drawn has been influenced by the demand for organs. With the concept of “brain death”, organs can be retrieved in a more viable state, as opposed to waiting until the heart stops beating. But doctors and ethicists (I assume today, as well as in 2001) are still arguing about the different kinds of brain death, and even those who accept it, they still have to train themselves to think of a warm, breathing body as “dead”:

“It took us years to get the public to understand what brain death was,” [Howard M. Nathan, who heads an organ-procurement group] said. “We had to train people in how to talk about it. Not that they’re brain dead, but they’re dead: ‘What you see is the machine artificially keeping the body alive . . .’ “ He stopped and pointed to my notebook. “No, don’t even use that. Say ‘keeping the organs functioning.’ “

And if you’ve got even more time to spend reading life-or-death longform pieces, I’ll pitch this 13,000-word Pulitzer-winning piece by my ProPublica colleague, Sheri Fink. The subject is how doctors at a New Orleans hospital may have been to quick to euthanize a group of patients while desperately waiting for rescue after Katrina.

The overarching theme, as it is in the New Yorker articles mentioned here, is what makes a life worth living/saving, and can doctors make that decision when patients can’t?


“Is she dying?” one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.


He wanted to show that the higher-brain rationale, which holds that living without consciousness is not really living—and which the President’s commission rejected because it raised questions about quality of life which science can never settle—was the sub-rosa justification for deciding to call a brain-dead person dead. He wanted to make it clear that these doctors were not making a straightforward medical judgment but, rather, a moral judgment that people like Matthew were so devastated that they had lost their claim on existence.


According to Memorial workers on the second floor, about a dozen patients who were designated as “3’s” [a triage category for patients thought to be close to death] remained in the lobby by the A.T.M. Other Memorial patients were being evacuated with help from volunteers and medical staff, including Bryant King. Around noon, King told me, he saw Anna Pou holding a handful of syringes and telling a patient near the A.T.M., “I’m going to give you something to make you feel better.” King remembered an earlier conversation with a colleague who, after speaking with Mulderick and Pou, asked him what he thought of hastening patients’ deaths. That was not a doctor’s job, he replied. Patients were hot and uncomfortable, and a few might be terminally ill, but he didn’t think they were in the kind of pain that calls for sedation, let alone mercy killing. When he saw Pou with the syringes, he assumed she was doing just that and said to anyone within earshot: “I’m getting out of here. This is crazy!” King grabbed his bag and stormed downstairs to get on a boat.

David Brooks: Maybe Sandra Bullock should’ve stayed in the kitchen

So David Brooks in the NYT, using an almost-current event (Sandra Bullock winning the Oscars, then getting humiliated by hubby Jesse James) takes another (not half-bad) try at an argument that feminists might characterize as “Maybe women would be happier if they focused less on their career and more on their man and family”:

Two things happened to Sandra Bullock this month. First, she won an Academy Award for best actress. Then came the news reports claiming that her husband is an adulterous jerk. So the philosophic question of the day is: Would you take that as a deal? Would you exchange a tremendous professional triumph for a severe personal blow?

Nonetheless, if you had to take more than three seconds to think about this question, you are absolutely crazy. Marital happiness is far more important than anything else in determining personal well-being.

To be fair, Brooks doesn’t explicitly focus on wives and their role in gluing a family together, it just happens that Bullock is a woman…but it’s hard to not accuse Brooks of patriarchy when he makes this an either-or situation, as if the only two options for Sandra to choose between are “Win an Oscar” or “Have a faithful husband”…ignoring the fact that it was Jesse James who made a trade between being true to his Oscar-winning wife or bonking some tattooed-bimbo. And, completely ignoring Tiger Woods, who really did choose a world-famous career (and the attendant porn stars that come with it) over his family.

Even aside from that, Brooks’ try at the “money and power isn’t everything” philosophy opened up the conservative Brooks to a zinger, based on a more-currenter-event, from the comments:

B. Starks, Austin, TX: Mr. Brooks, great argument for ensuring health care for all and legalizing gay marriage. I imagine your conservative allies will not see it this way, but the facts noted in the column could be used to shore up both positions, and I hope they are indications you are in favor of both.

NYT: Radiation (IMRT) horror stories; Woman has massive hole burned in chest because several doctors and physicists didn’t know “in” from “out”

Graphic: New York Times

Yet another case study on how the most educated of our professionals are not fail-safe. Not just not-fail-safe, but not not-able-to-tell-up-from-down-safe. The New York Times has an incredible story today, apparently one of many, into the dangers of new radiation treatment called Intensity Modulated Radiation Therapy.

It covers a lot of ground, but one anecdote that sticks out is of Alexandra Jn-Charles, who underwent IMRT to treat breast cancer. IMRT involves delivering radiation as a precise beam to kill a tumor…a great way to avoid the healthy-cell-killing symptoms of traditional radiation treatment.

However, Ms. Jn-Charles ended up with a hole in her chest so big that “you could just see my ribs in there.”

How did it happen? Numerous therapists, and even physicists, failed to notice a simple binary error:

One therapist mistakenly programmed the computer for “wedge out” rather than “wedge in,” as the plan required. Another therapist failed to catch the error. And the physics staff repeatedly failed to notice it during their weekly checks of treatment records.

Even worse, therapists failed to notice that during treatment, their computer screen clearly showed that the wedge was missing. Only weeks earlier, state health officials had sent a notice, reminding hospitals that therapists “must closely monitor” their computer screens.

The series of moronic, tragic errors calls to mind Atul Gawande’s story of the checklist, in which a 5-step list of tasks for doctors, as simple as washing their hands, reduced infection rate for a certain procedure to zero.

What’s the checklist for this cutting-edge radiation therapy?

Maybe there would be one if hospitals weren’t underreporting their accidents, according to NYC’s health department, by “several orders of magnitude.” (According to the NYT, the department apparently did not realize this until the Times started asking).

And then there’s the bad software angle. Varian Medical Systems gets criticized for code that, while allowing for the delivery of a precise and powerful stream of electrons to a tumor, has the stability and error-recovery ability of Windows ME. In the case of Mr. Jerome-Parks, an IMRT machine delivered radiation “from the base of his skull to his larynx” instead of just at the tumor. The reported problem: crash-prone software with poor/non-existent data recovery:

The investigation into what happened to Mr. Jerome-Parks quickly turned to the Varian software that powered the linear accelerator.

The software required that three essential programming instructions be saved in sequence: first, the quantity or dose of radiation in the beam; then a digital image of the treatment area; and finally, instructions that guide the multileaf collimator.

When the computer kept crashing, Ms. Kalach, the medical physicist, did not realize that her instructions for the collimator had not been saved, state records show. She proceeded as though the problem had been fixed.

“We were just stunned that a company could make technology that could administer that amount of radiation — that extreme amount of radiation — without some fail-safe mechanism,” said Ms. Weir-Bryan, Ms. Jerome-Parks’s friend from Toronto. “It’s always something we keep harkening back to: How could this happen? What accountability do these companies have to create something safe?”

Just incredible. Read the whole story here.

Also, a great animated graphic illustrating how IMRT can go awry.

My blog headline says “doctors” when it was “therapists” who apparently missed the “out” and “in” difference 27 times…though, presumably, doctors are involved somewhere in the operational process, even if they aren’t programming the machine themselves.

A NYT reader who says he’s an engineer has this insight:

What did Wedge in / Wedge out really imply to the software programmer? Did he understand the true consequences of the two setting options? Did he have any understanding of medicine at all? Or was his knowledge just limited to what the lines of software code could do?

This person might previously have written software for operating a sprinkler in a garden, where he provided options for turning the sprinkler on and off. Thus, a line of software code could manage Sprinkler On / Sprinkler Off. A similar line of code could also manage Wedge In / Wedge Out. The software is not really all that different; very often, all it does is activate/deactivate one or another relay. But what were the relative levels of importance of the selected options in these two cases? Sprinkler Off would mean the lawn didn’t get watered on one day. No big deal, and easily fixed. What about Wedge Out? Did he know what that could mean for the patient, and how many checks and verifications he would need to include for that in order to take into account situations like the operators of the equipment being mentally distracted, careless, etc.? Should he make lights to flash; warning sounds to be emitted; additional confirmational prompts and checklists each time? To make the system 100% foolproof, would the operator in this case require additional reminders / actions to be taken, which might not be required in the case of the gardener?

I think, now that technology is here to stay and since we are growing increasingly dependent on it, that every person in the chain, including electricians, mechanics, software programmers and others, need to become more medically aware of the implications of his/her particular role in the chain. They should no longer be distanced from the ultimate outcome as they are now, focussed on local actions and completion of job targets.

For instance, this programmer must be made aware that he is setting the radiation scope that could destroy a person. He must think deeply about practical issues and about how to take things like human error into account. He should not get away with just thinking he has met his daily target for number of lines of code written.

I usually don’t use the word “paradigm”, but I think what we need here is a major paradigm shift regarding what we should expect from technology and its providers in medicine. The old saying, “A chain is only as strong as its weakest link”, applies very strongly here.

Chartjunk? Slate’s Kaus vs. NYT’s David Leonhardt on hospital beds and better health care

An example of chartjunk: several colors and 26,000+ pixels to describe five hard-to-read numbers

David Leonhardt put forth a gee-that’s-unexpected-but-possible thesis in the Dec. 30 New York Times: Limiting hospital beds forces hospitals to provide more efficient care; allowing limitless beds pressures hospitals to fill them with patients undergoing unnecessary, costly treatments (Economic Scene: Health Cuts With Little Effect on Care):

Since 1996, the Richmond area has lost more than 600 of its hospital beds, mostly because of state regulations on capacity. Several hospitals have closed, and others have shrunk. In 1996, the region had 4.8 hospital beds for every 1,000 residents. Today, it has about three. Hospital care has been, in a word, rationed.

The quality of care in Richmond is better than in most American metropolitan areas, according to various measures, and it continues to improve. Medicare data, for example, shows that Richmond hospitals do a better-than-average job of treating heart attacks, heart failure and pneumonia.

…when it comes to health care costs, Richmond’s rationing has made a clear difference. In 1992, it spent somewhat less than average, per capita, on Medicare — 126th lowest out of 305 metropolitan areas nationwide. Since then, though, costs have risen at a significantly slower pace than they have elsewhere. As a result, Richmond had the 39th lowest costs in 2006.

A pretty tantalizing concept, and one that helps advocate for the school of thought that doctors should have some sort of restriction on how much “Cadillac” health care they can provide a patient. But even if Leonhardt’s thesis is correct, Slate’s Mickey Kaus is correct to point out that Leonhardt provides virtually no useful evidence to prove it:

1. In Richmond the number of beds per 1000 residents fell from 4.8 in 1996 to “about three.” You would now expect Leonhardt to unleash a string of stats showing that medical care in Richmond has gotten better despite these limits. You would be wrong. Care in Richmond is “better than in most American metroplitan areas,” says Leonhardt. OK, but what was it like before? Maybe it was better than nearly every metro area before. Richmond hospitals do a “better-than-average job of treating heart attacks,” Leonhardt says. OK, but were they much-better-than-average before? Anyway, that’s just heart attacks. … Oh, and a patient named Janet Binns–actually, a patient’s daughter–feels there is “nothing cheap about the care.” Well, all right then!

This goes on, for six more points, with Kaus accusing Leonhardt of being spoon-fed statistics from the White House’s own partisans.

Kaus himself doesn’t provide enough beef to make the accusation a clear verdict, but he’s right that Leonhardt’s statistical reasoning is shallow. He commits the most basic fallacy of “correlation does not imply causation” (What other reforms, demographic changes would’ve affected hospital Medicare data?). He just plain omits, Kaus points out, any substantial data (what are the “various measures” in which Richmond performs well in? In the on-the-other-hand statement, “Some of its hospitals do poorly on Medicare’s metrics,” what are these metrics, and how statistically significant are they compared to the ones Leonhardt uses to support his thesis?). And there are assumptions that seem like common sense…but on second thought…need more explanation (why is Richmond’s performance on heart attacks, heart failure and pneumonia the quality-care metric only worth mentioning?)

This thin-on-numbers piece is a bit unexpected considering that Leonhardt, according to his bio, studied applied mathematics at Yale. But maybe it’s not a failure of the reporting as it is the storytelling form. Leonhardt may have all the numbers, but lacks the column inches to describe them all.

So I’d consider it a textbook example of how traditional narrative can fall flat. Leonhardt’s claim just begs to be illustrated with a few charts and graphs. A line chart showing Richmond’s heart-attack-treatment metric from 1992 to 2006 would concisely refute Kaus’s point (at least one aspect of it) in far lesser space than 80 words. As it is, Leonhardt’s article is effectively a textual example of what infographic-guru Tufte calls “chartjunk”: an unnecessary amount of ink to, at best, clumsily support an important theory, or, at worst, to hide the skimpiness of the actual data.

The Times still leads the way in alternative forms of storytelling. You’ve probably already seen their amazing infographic plotting Netflix rentals by geography. 3,000 words (some of which would be devoted to pithy, but generally unhelpful, cherry-picked quotes from your average-Joe-Netflix-user, to illustrate why ‘Milk’ was so popular in Chelsea) would barely have covered the trends a single metro area, nevermind a dozen.

Bad Nurses, and Our Tragic Inability to Track Them

Get rich in the temp nursing business

Get rich in the temp nursing business

On Sunday, my ProPublica colleagues Tracy Weber and Charles Ornstein, in conjunction with the Los Angeles Times, put out a story examining the lack of standards in the temp nursing agency, a dangerous situation considering California’s desperate shortage of nursing staff.

Emboldened by a chronic nursing shortage and scant regulation, the firms vie for their share of a free-wheeling, $4-billion industry. Some have become havens for nurses who hopscotch from place to place to avoid the consequences of their misconduct. (see related story: A ‘Crazy’ Way for an Industry to Operate)

A joint investigation with the Los Angeles Times found dozens of instances in which staffing agencies skimped on background checks or ignored warnings from hospitals about sub-par nurses on their payrolls. Some hired nurses sight unseen, without even conducting an interview.

The gist of the problem: California lacks virtually any kind of tracking of errant temp nurses. This nurse, for example, was accused of stealing drugs from at least six hospitals, suffered a drug-induced seizure on the job, and had his Minnesota nursing license suspended before California got around to filing an accusation against him. Two years later, after a few more reported incidents of drug theft, the California registered nursing board finally revoked his license when he didn’t make his hearing on time.

Charlie and Tracy have been covering this story even before they joined ProPublica; LATimers Maloy Moore and Doug Smith contributed a massive amount of the essential research and data-analysis. This temp nurses chapter is just another consequence of what appears to be awful records-keeping and sloth by the various oversight bodies.

My own contribution to the coverage was small, the most notable aspect of which was this Ruby on Rails site I built to catalogue the sanctioned nurses, a relatively minor task compared to actually collecting and parsing the data (i.e. reading through all the PDF files for the buried information). . It was pretty simple, allowing users at a glance to see the numbers of disciplined nurses by various categories, including year and type of discipline. I was a little skeptical of doing it at first, just because the CA nursing board does have a searchable and functional database of its own.

Theoretically (well, if it weren’t the case that the records themselves are often incomplete, so that criminal nurses come up with a clean sheet), any member of the public could look up their own nurses’ records and avoid the bad ones. But the meat of the Charlie’s and Tracy’s is the numbers: 1,254 days on average to discipline a nurse (compared to 173 for Texas). 1,706 days before one nurse, who was kicked out of a drug-recovery program and considered a threat to public safety, had even an accusation filed against her. Our site makes it evident that hard numbers, not just heartbreaking anecdotes,  argue against California’s regulatory status quo.

A screenshot from our sanctioned nurses database

A screenshot from our sanctioned nurses database

The reporters on this story put in months of time manually tabulating the data to come up with the thrust of their stories. Sadly, all of these numbers and statistical conclusions were probably right under the nursing board’s nose. The regulators apparently track dates and types of accusations and disciplines for each nurse. A few simple database queries would’ve quickly uncovered the glaring delays and bottlenecks in the system (e.g. (SELECT AVG(TO_DAYS(`date_discipline`)-TO_DAYS(`date_initial_complaint`)) as average_delay from `disciplinary_actions`).

A day after Charlie and Tracy’s initial story in July 2009, Gov. Schwarzenegger sacked a majority of the registered nursing board and new regulations include making public the restrictions on a nurse’s license. Read ProPublica’s complete coverage on California’s flawed oversight of health-care workers here.