The happiest six months of her life: Hospice care

Fiona Harrison's story:

To the Editor of the New York Times:

Your article, "Weighing the Medical Costs of End-of-Life Care," on Dec. 23, focuses on quantity of life versus cost, but what about the suffering of the patient and the family?

During her first year, my daughter Erica was treated at UCLA Medical Center. From birth she suffered severe neurological defects, causing her great physical pain. My husband and I, daily witnesses to her suffering, decide to seek pediatric hospice care.

UCLA refused to consider a hospice referral, so we decided to transfer Erica to Children's Hospital Los Angeles, which serves a less affluent population, and where the doctors supported a transfer to hospice care.

The results were dramatic. Her care focused on pain relief over survival, and Erica had the happiest six months of her life. She died at home, in our arms – perhaps a few months earlier than if we had kept her at UCLA, at lower cost and, most important to us, with much less pain and suffering.

Read Art Buchwald's hospice story. Thanks to Fiona Harrison for her letter to the editor in the New York Times on Jan. 2

Advice to families with terminally ill loved ones: You can insist on hospice care if you want to.

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.

23 Employees: Farrah Fawcett and Patient Privacy, Part 2

California health regulators fined Kaiser Permanente's Bellflower hospital $250,000 Thursday for failing to keep 23 employees from snooping in the medical records of Nadya Suleman, the mother who set off a media frenzy after giving birth to octuplets in January.

The fine is the first monetary penalty imposed and largest allowed under a new state law enacted last year after widely publicized violations of privacy at UCLA Medical Center involving Farrah Fawcett, Britney Spears, California First Lady Maria Shriver and other celebrities.

The breaches involving Farrah's medical records -- first reported by The Los Angeles Times in April 2008 -- enraged California lawmakers and prompted the new law. In Farrah's case, a low-level UCLA employee accessed her records more often than her own doctors. The employee pleaded guilty last year to federal felony charges of selling the information to the National Enquirer.

Farrah said recently that she had suspected that hospital staff were leaking her records. To test that, she delayed telling her family about a specific recent diagnosis – until after it was leaked to the press – proof that an employee had been snooping.

Advice to people concerned about privacy: Ask your doctor to sign this form by the Patient Privacy Rights Foundation.

Read last year's story about Farrah.

Thanks to Charles Ornstein for the source story in the May 15 issue of the Los Angeles Times.

Read all about it: UCLA Medical Center's healthcare for Farrah, Britney Spears, Tom Cruise & Mariah Carey

California health regulators have connected 14 more people affiliated with UCLA Medical Center, including four physicians, to the improper viewing of celebrity medical records, bringing the number of current and former workers apparently implicated in the snooping scandal to 68.

The additional violations came to light in a report by the California Department of Public Health, which was sent to the hospital Friday. The findings are the latest to stem from reports in The Los Angeles Times about UCLA employees' prying into records of celebrities and co-workers. The regulators faulted UCLA for failure to maintain patient confidentiality and report the breaches to regulators.

One employee reviewed the records of actress Farrah Fawcett on 104 days between July 1, 2006, and May 21, 2007. She also looked at the records of pop star Britney Spears, whose medical files have been viewed inappropriately by dozens of other UCLA workers. The employee was indicted by a federal grand jury last month for allegedly selling information to the news media from medical records of celebrity patients. If convicted, she faces up to 10 years in prison.

Earlier news stories described the inappropriate viewing of the UCLA Medical Center's healthcare records of Tom Cruise and Mariah Carey.

State inspectors found that 13 other people affiliated with UCLA apparently snooped on Britney's records between July 2006 and May 2007. That is in addition to 53 staffers identified in three previous state reports who looked at her records on other occasions. The 13 included three physicians, a physician trainee, three registered nurses, two outside contractors, a volunteer and three support staff.

A note on this blog's policy on the "outing" of healthcare organizations where errors have occurred: Normally I do not name the organization. In this case, because of their published history of numerous repeated errors with no apparent system safeguard to prevent their recurrence, I have referred to UCLA Medical Center by name.

Advice to Hollywood celebrities: Choose other places than UCLA Medical Center to get your healthcare, unless you want riffraff like me to read about it.

Read another privacy story.

Thanks to Charles Ornstein for the source article in the May 14 issue of the Los Angeles Times.