Saturday, December 27, 2008

The Sad Case of Nataline Sarkisyan Continues

Almost a year ago, in the context of the New Hampshire primary, I criticised John Edwards for politicizing the death of seventeen year old Nataline Sarkisyan, who experienced liver failure after a bone marrow transplant for leukemia, and whose insurer refused to cover liver transplantation. Here are the concluding paragraphs from that post:
Every health system has to set limits. This would be true even if Mother Theresa were the health czar. It is entirely reasonable to question the evidence basis for UCLA’s proposal or Cigna’s denial. Similarly, it is entirely reasonable to argue that the bar for evidence should be lower in last chance situations than in other domains of care. But Edwards, who I admire and largely agree with politically, does the public a disservice by presenting the denial as a moral crime.

Edwards favors extending Medicare to a wider range of citizens. If he ends up as president, it will be interesting to see how he addresses the issue of limits. As Oregon Governor John Kitzhaber recognized 20 years ago, universal coverage is impossible without limits. No limits, no universality. It is that simple.

True leaders must be educators. Understanding the ethical necessity for limits is counter-intuitive for those who are not familiar with the health sector. Edwards may have done an effective piece of campaigning yesterday, but he was not providing the kind of ethical leadership that improvement of our health system requires.

This is especially unfortunate. Edwards is a superb communicator -- just the kind of voice we need to help us come to grips with the sad fact that health care limits, well set, are an ethical necessity, not a moral abomination.
This morning the Associated Press reported that the Sarkisyan's attorney, Mark Garagos, is suing Cigna:
Insurer Is Sued Over Liver Transplant

The family of a 17-year-old leukemia patient has sued the health insurance giant Cigna over her death in 2007 after the company initially refused to pay for a liver transplant.

The lawsuit, filed last week in Los Angeles County Superior Court by the family’s lawyer, Mark Geragos, accuses the company of breach of contract, unfair business practices and intentional infliction of emotional distress. It accuses Cigna of delaying and rejecting valid claims, which resulted in the wrongful death of the girl, Nataline Sarkisyan.

The insurer, based in Philadelphia, eventually approved the transplant after Nataline’s family held a rally outside its office in suburban Los Angeles. Nataline, however, died hours after the approval was secured.

Chris Curran, a spokesman for Cigna, said the company felt that the lawsuit was without merit. Mr. Curran said the company had volunteered to pay for the procedure out of its own pocket.
Mortality is sad, but the death of a seventeen year old is tragic. For any health system, deciding about coverage in a situation like that of Nataline Sarkisyan, is the most difficult challenge imaginable. While I have no expertise on liver transplantation for patients with leukemia, my impression is that a strong case can be made that not covering the transplant was a fair and justifiable decision. If the case comes to trial that's what the jury will be asked to decide. And if the verdict is appealed the Appellate Court(s) will have to address the issue the U.S. has tried so hard to avoid - rationing.


eric said...

May UCLA have had a more human, if not sinister, motivation to advise the bone marrow transplant? Were they shifting responsibility for the complication of their work to the insurance company? Even if the bone marrow transplant is managed correctly, liver failure is a known complication. For example, I have had elderly patients with multiple diseases who, near the end of their lives, fall and break their hips. Though they have already stated their wish to not have aggressive therapy, they agree to hip repair surgery. They then suffer multiple complications, such as heart failure and pneumonia. Then, their treating physicians apply all of the aggressive therapies, including mechanical ventilation, that the patient had previously said that they didn't want. The doctors do this because they don't want their patient to die of a complication of their work. Even if the complication is expected, if not inevitable. It is a matter of the doctor's culture rather than the patient's wishes.

Jim Sabin said...

Hi Eric -

Unfortunately, the pattern you have seen some of your elderly patients experience does indeed happen - I've seen it too. While it is theoretically possible that this dynamic could have influenced UCLA's recommendation, my guess is that the likelier explanation is that Nataline's treatment team was acting as "pure advocates" - recommending an intervention that a technology assessment process could legitimately conclude was "experimental" but that the team believed in and wanted to provide.



Jim Sabin said...
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