Don't ever come back: Barriers to palliative care

Dr. Bruce Ferrell, who helps lead the palliative care program at UCLA Medical Center, recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year. "He had never ever been told that he would have to live with a ventilator and dialysis," Dr. Ferrell said. "He was never told that this was as good as it's going to get."

Dr. Ferrell talked with the patient about whether he might want to leave the intensive care unit (ICU) to go home and receive hospice care. But when the surgeon overseeing the case found out, he was furious.

"We do not use the h-word [hospice] on my patients," the surgeon told Dr. Ferrell. "Don't ever come back."

The patient chose to leave.

The UCLA Medical Center consistently ranks as one of the most expensive places in the U.S. to get end-of-life care, though its patients' outcomes are similar to hospitals that spend much less.

Advice to patients near the end of life: Even when in the hospital, you can insist on considering hospice care.

Read a story about hospice care. Thanks to Reed Abelson for the source story in today's New York Times.

The fine print excluded nearly all the treatments: Aetna’s limited benefit insurance policy & bankruptcies

Lawrence Yurdin is a 64-year old computer security specialist. He had insurance through Aetna – a "limited benefit" plan, which, in hindsight, was not worth the paper it was printed on. Or, more precisely, as Aetna spokesperson Cynthia Michener said, "Limited benefits aren't right for everyone, and it clearly wasn't right for Mr. Yurdin." Aetna further acknowledged that his age and condition – an irregular heartbeat – made it likely that he would require more comprehensive coverage.

Lawrence learned this the hard way when he went to the hospital for two separate heart procedures last year, and two more procedures later.

While the Aetna brochure indicated he had purchased $150,000 of hospital care, the fine print excluded nearly all the treatments he received in the hospital, according to today's front-page story by Reed Abelson in the New York Times. With his unpaid medical bills approaching $200,000, he had to file for bankruptcy around Christmas time.

His case is common: three-fourths of the people who file for bankruptcy because of medical bills actually had insurance. As Harvard Law School Professor Elizabeth Warren says, "People do not realize that they are one diagnosis away from financial collapse."

A highly instructive expose by recent insurance executive Wendell Potter about these and other sneaky tactics used by large insurers appears in his testimony at U.S. Senate hearings last week.

Advice to people with a limited benefit health insurance policy: Read the fine print carefully. Maybe you should dump your insurance company before they dump you.

Advice to government legislators and regulators: Suntan lotion bottles must show their Sun Protection Factor prominently. Consumers know that a high SPF will protect them much better than lotion with a low SPF. A simple number that rates the Bankruptcy Protection Factor (BPF) of limited benefit insurance policies will keep consumers from getting badly burned by shoddy insurance products. Or maybe "B" will stand for something else…

Read about another cruel insurance practice.

His last, best and only chance: Experimental drug for Duchenne muscular dystrophy

Doctors discovered that Jacob Gunvalson had a rare and devastating genetic disorder – Duchenne muscular dystrophy - when he was 7 or 8, about eight years ago. Many of the young men who have the disease, which nearly always affects males, do not live past their 20s. A biotechnology company is now testing an experimental drug, PTC124, which would give Jacob "his last, best and only chance to slow, stop or even reverse the effects of his condition," according to his attorney, Michael Hatch.

But the company refuses to give Jacob the drug, as he does not meet the narrow guidelines for the research protocol. The reason: scientists at the company worry that it may not be effective for a patient at Jacob's stage of the disease: Jacob can no longer walk. If the drug is known not to be effective in him, the company executives worry that that news may block the company's chances of proving it is effective and bringing it to market.

Jacob's mother Cheri, who has a masters degree in nursing, seems to have done all the right things. She has been active in a parent's advocacy group, Parent Project Muscular Dystrophy, which has helped PTC Therapeutics, the drug maker, to find financing for its research. Indeed, she was instrumental in getting federal legislation passed to provide more research money for the disease.

The company may even have told her that it would give Jacob the drug. Drug companies sometimes allow patients access to experimental drugs through a "compassionate use" policy. In this way, patients enroll in a single-patient study, or participate in a clinical trial, even if they do not meet the eligibility criteria and their results are not included in the final study.

In the absence of that, both Jacob and his mother are bitterly disappointed, after thinking "so many times," he said, that he would receive the drug. He is increasingly too tired to do some of his favorite activities like cooking and painting.

Advice to family members of gravely ill patients: Explore compassionate use if an appropriate drug is in clinical trials. If the answer is no, take your story to the news media.

Read an experimental drug story.

Thanks to Reed Abelson for the source article in the July 17 issue of the New York Times.

He's suing the device maker: Prodisc artificial spinal disk lawsuits

Calvin Timberlake, a 50-year-old former forklift operator who lives in Texas, had a Prodisc implanted in his spine four months after the US Food and Drug Administration approved it. Prodisc is an artificial metal and plastic spinal disk that is meant to relieve lower back pain by replacing a damaged disk between vertebrae of the spine. Calvin's surgeon was not involved in the clinical trial, though he apparently had invested in Prodisc. The Prodisc soon came apart, requiring an emergency operation to remove it. Calvin remains in extreme pain, and has to take medication to control the pain.

Calvin is suing Synthes, the Prodisc's maker, but not his surgeon, whom he does not blame for the problems.

Many of the surgeons who co-authored articles in peer-reviewed medical journals had major investments in the Prodisc, and at least some of them did not disclose their investments to the journal editors when they submitted their manuscripts for publication. They stood to profit financially if the Prodisc succeeded in the market, according to confidential information from a patient's lawsuit that was settled last year.

Advice to people who may have surgery to implant a medical device: Ask your surgeon's office manager if the surgeon has a financial stake in the device.

Browse for related stories in the index at the very bottom of this page, or read another Texas spinal surgery lawsuit story.

Thanks to Reed Abelson for the source article in the Jan. 30 issue of the NY Times.