ARTS & FARCES internet

These are not the best times to be a permanent kidney failure patient. Sometimes it seems like we’ve come a long way in the past 30-odd years when death squads decided which patients were deserving of dialysis (and would live) and which were sent home with a handful of morphine to die in a narcotic stupor. But then a wave of news comes along to indicate that we’re not that much further along after all.

Consider Kaiser Permanente’s San Francisco Medical Center. It was criticized by the national Organ Procurement and Transplantation Network for mismanagement of its transplant program. The Medical Center, according to the network, “effectively denied patient access to kidney transplantation and threatened safety for patients on its waiting list.” Last May the Medical Center announced it would close down its transplant program “following accusations that patients’ lives were endangered by botched paperwork and administrative errors.”

Meanwhile New York was found to have the worst dialysis patient outcomes in the US according to government records. New York’s dialysis market is dominated by small providers, “many of them run by people with little background in medicine who entered the business to meet the surging demand,” according to Richard Perez-Pena writing in the New York Times:

“Newly released patient data show that people who receive their dialysis from a national chain generally fare better than those treated by an independent provider.”

New York, in a well-meaning initiative with unintended consequences, prohibits publicly traded corporations from owning health care facilities.

Wired editor Chris Anderson has publicly released a first draft of where he thinks publishing is headed. Although specific to the monthly magazine form, Anderson’s principles can be applied to any publishing format—magazines, books, websites—you name it, the ideas are worthy of any editor’s consideration. Anderson’s key concepts are expressed as six tactics:

1. Show who we are;
2. Show what we’re working on;
3. Process as content;
4. Privilege the crowd;
5. Let readers decide what’s best
6. Wikifiy everything

Radical indeed. But Anderson hedges his bets—intelligently, one presumes—by admitting the seriousness of the consequences of his being wrong. His strategy is to advocate taking little steps. Small failures won’t bring everything crashing about his ears, and small successes can be scaled quickly across Wired‘s media properties.

In a follow-up to initial criticism, Anderson acknowledges that the kind of open source journalism he’s advocating will only work in “big” thesis-driven stories. Most of what Wired publishes is either too short or too voice-driven to work with this methodology.

It’s going to be interesting to watch as Wired begins its experiments with this open source approach to publishing. It’s going to be more interesting to see who in the publishing community is intelligent and ballsy enough to start trying to swim with this particular current, rather than against it.

Is it ethical to transplant a kidney in an 85-year-old dialysis patient?

Before answering, consider that unlike heart and liver transplants—which go to the patient most likely to die without them—kidney transplants go to the next person on the list. Whomever’s been waiting longest is next up.

That’s one of the reasons I’ve declined several kidneys during my six year tenure on dialysis and have placed myself on “hold” on the waiting list. I have not, however, removed myself from the list entirely.

For a Denver nephrologist, cited in Alan Zarembo’s special report in the Los Angeles Times, a kidney transplant for an 85-year-old patient was both unreasonable and unethical. The organ would likely last much longer if given to a younger patient.

The 85-year-old patient was removed from consideration for the available organ. A few weeks later, ethical considerations presumably aside, he was removed from the waiting list completely—he was too old. He died of a heart attack 2.5 years later. Dialysis is extremely hard on the body’s systems. Maybe he would have lived longer with a transplant. But maybe not. Life’s like that.

According to Zarembo, “With little public scrutiny, transplant doctors and administrators are discussing who should receive life-extending kidneys—and support is growing for a national system that would favor the young.” The United Network for Organ Sharing (UNOS), the organization that oversees organ allocation in the US, already gives preference to patients younger than 18. “Last year,” Zarembo writes, “it moved them to the front of the line for high-quality organs from donors younger than 35.”

While UNOS oversees allocation of transplant organs in the US, individual hospitals set their own policies with regard to patient viability.

UNOS will hold public hearings on the issue of rationing organs next year, although the final decision lies with the Health Resources and Services Administration (HRSA).

The idea, based on an analysis of more than 300,000 kidney transplant waiting list patients since 1987, is to dole out available organs with maximum efficiency. Maximum efficiency as measured by maximum longevity—of the kidney, not the patient. The analysis factored age, body mass index, diagnosis, health, race, number of years on dialysis, and number of years of post-transplant survival.

Today more than 70,000 dialysis patients are waiting for a kidney—more than double the number waiting 10 years ago, and some researchers estimate that it could reach 100,000 by 2010. The average wait for an organ is now more than three years (and up to seven years in some cities).

“The growth has been driven by older patients—over 50, and increasingly over 65—who are joining the waiting list in record numbers and claiming an unprecedented share of kidneys,” writes Zarembo, who claims “from a statistical standpoint, kidneys are being squandered.”

“Nearly everybody, at least up to age 70, lives longer with a transplant than with dialysis. But the young gain the most extra years of life. In the mathematics of transplantation, they have the potential for the most ‘net lifetime survival benefit.’”

So, that’s what it’s come down to. Mathematical analysis and computer modeling will determine who’s a viable transplant candidate and perhaps more importantly, who’s not.

Representative Bill Thomas (R-California), chair of the House Ways and Means committee, has announced a hearing on end-stage renal disease (ESRD) patient safety and quality issues. The hearing will take place on Wednesday, December 6. Unfortunately, testimony will be allowed from invited witnesses only, although anyone can submit a written statement for consideration for inclusion in the printed record.

In 1972, Medicare began to cover dialysis for ESRD patients. Between 1998 and 2003, treatment spending increased by almost 50 percent. Medicare currently spends about US$64,000 on each dialysis patient it covers.

According to Thomas’s advisory:

“In the last 10 years, mortality rates for ESRD patients have declined except for patients that have been receiving therapy for five or more years. During the same time period, however, hospitalizations for infections and cardiovascular complications are up 20 and 10 percent, respectively.”

Being that I’ve been a non-Medicare ESRD patient for six years, this doesn’t bode well.

Because Representative Thomas is retiring at the end of this session, maybe something worthwhile will come out of this hearing. Retiring politicos are nothing if not unpredictable.

The December 1 issue of Forbes has a surprisingly excellent special report on books and the publishing industry. The future of publishing may indeed look a lot like a composite of Dave Eggers and Cory Doctorow, but it seems the consensus is that books will be around for a while. We like them:

“People still burn books. But that only means that books are still dangerous enough to destroy. And if people want to destroy them, they are valuable enough that they will endure.”