Patient-centered TV: 24 hours a day

We love Grey’s Anatomy, E.R., Chicago Hope, St. Elsewhere, Marcus Welby MD, and all the others:  the drama of near-death experiences and rescue by wise, handsome doctors and beautiful nurses:  What’s not to like?

And hospitals love the publicity of real-life TV shows about their doctors and nurses as heroes, for it polishes their public image.  Some patients may like appearing on TV, too.

But not always.  Anita Chanko was horrified to see her husband’s death in an Emergency Room televised, without her consent, on ABC’s program, “NY Med.”  When her husband had been hit by a truck late one night and brought to the E.R., a doctor had blocked her from seeing him.  But they didn’t block the TV videographers who recorded the hospital’s treatment of patients 24 hours a day.  The hospital’s Vice President of Public Affairs explained that “you can’t buy this kind of publicity, an eight-part series on a major broadcast network.” 

If all patients formally consent beforehand to being broadcast, that is their choice.  But for me, if a hospital is concerned with my dignity and privacy, please don’t broadcast me at my most vulnerable and weakest moment for your viewers’ titillation.

Read a story about the Patients' Bill of Rights.  Thanks to Charles Ornstein of the New York Times for the story, “Dying in the E.R., and on TV,” and Dina Litovsky for the photo.

Happy New Year: It's your medical record, but you can't see it

Two of my encounters with the healthcare system yesterday ranged from the sublime to the ridiculous. First, the sublimely good one: I went to our veterinarian's office to buy some toothpaste for my dog. When I asked for it, they asked my last name. I was given the toothpaste, and I paid for it. With the receipt, the clerk handed me a one-page printout listing the dates for Jackson's next well-dog checkup and the next three years of immunizations, with his photo and name, address, and owners at the top of the page. I was delighted: without my even asking, they gave me tailored information to keep my beloved pet healthy.

Then, later in the afternoon, the ridiculous. I brought another beloved pet, my daughter, to see a sports medicine doctor for a minor issue. I asked the clerk to see her medical record. They couldn't give it to me. Why? For privacy reasons. Whose privacy?! Well…it's policy, so we can't. Why did I want it? To do my homework in advance, and to save the doctor's time during the appointment. Following their procedure, I filled out a paper release form, to be handled by Medical Records. Could I FAX them the release, and have them FAX me the record? You'd need to call Medical Records for that. OK; I called, but could only get a recording that said they'd need 7 to 10 days to mail the doctor's progress note to me. I talked to the Practice Administrator. I couldn't get my daughter's record in advance, nor could my daughter. Well, whose record is it? It's yours, but our policy says you can't see it. Who set the policy – the Director of Nursing? No. The CEO? No, a committee.

They had me; I was stumped, and we both knew it. Those were the magic words: "policy," and "committee." That meant logic and reasonableness wouldn't matter.

Advice for a New Year's resolution for dealing with a very old-fashioned medical system: To get "your" medical record, either keep a copy of the doctor's last note about your visit, or ask your doctor's Medical Records unit, two weeks in advance, to send it to you.

Read another story on my dog's medical record.

If they don't reach back: Hand-shaking etiquette for immunocompromised patients

George Sarnoff's question:
My wife’s immune system is compromised because of chronic lymphocytic leukemia. How can she tactfully refuse to shake a proffered hand without going into medical detail?

Philip Galanes' advice:
I walked in your wife's wedges, George, and tried avoiding shaking hands myself. It was no picnic: When people extend their hand in friendship, they want it shaken, an pronto!

At first, I kept my hands in my pockets and smiled extra big in lieu of shaking, which didn't work at all: Still Life with Outstretched Hand. Awkward! Next, I claimed a bum wrist, which led to a silly web of lies about a phony tennis injury, and my friend remembered that I play left-handed and we shake with our right.

So the best I can offer is a generic statement like, "I'm a little under the weather." It's vague and true. And if the would-be shaker is bold enough to inquire further (and many will), just say: "Oh, that's boring. How are you?"

So with apologies to Diana Ross, reaching out to touch somebody's hand isn't the only way to make the world a better place. Let's try a little understanding if they don't reach back.

Read another story about privacy.

Thanks to George Sarnoff for his letter, reprinted here from today's issue of the New York Times.

The patient makes barking noises when excited: Google's Personal Health Record

I did a sneaky test of Google's new personal health record, since I was wondering whether they would keep my personal health record confidential.

I filled out a completely truthful profile for a member of our family: a 6-year-old male weighing 35 pounds, who has a whistling heart murmur but is otherwise in excellent health, as he runs daily. The patient is excitable, and makes barking noises when excited or agitated – as dogs often do.

I haven't received any spam or junk mail in his name since entering his profile two months ago. This may mean Google is serious about keeping medical information private…at least for now.

Advice: Consider using a personal health record to track your family's treatments, immunizations, and upcoming appointments.

Coming from several blocks away to gawk: Privacy and neighbors

Dear Amy,
I have a sensitive issue and nosy neighbors. Three weeks ago, I was taken to the hospital because I suffered from major depression and was suicidal. I was in the hospital for eight days.

One week to the day of my release, I had four police cars, eight officers and two paramedics at my home to take me back to the hospital. Literally, every one of my neighbors was outside wondering what was happening, and they saw me being carried away on a stretcher. I was gone for three days and was diagnosed with bipolar disorder.

That weekend I had the police at my house four times because of my son running away, becoming violent and threatening suicide. The last incident ended with five police cars, 10 officers and the obligatory ambulance and paramedics. They blocked the roadway in both directions. Everyone was outside and watching, some coming from several blocks away to gawk.

What do I say to these people? Do I tell them I was suicidal, depressed and now diagnosed as bipolar? Do I tell them my son has a drug and alcohol problem along with also being bipolar?

Or do I just ask them why they're so interested in something so personal?

I need a subtle way to tell them that it's none of their business without revealing the true reasons. Any suggestions?

Amy's Advice to Wondering:
First of all, I hope your situation has stabilized. I can imagine that you feel very exposed because of the public drama brought on by these crises.

You don't have to reveal anything to your neighbors, but if you choose to, you can say, "I realize that things have been very dramatic at our house lately I've had some health issues that brought on a crisis for me and my son, but we're hoping things are better now."

Browse for related stories in the index at the very bottom of this page, or read another privacy story.

Thanks to Amy Dickinson for the source letter in her column, published in the June 16 issue of the Philadelphia Inquirer.

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.

Patients’ Bill of Rights

In November 1997, President Clinton's Advisory Commission on Consumer Protection and Quality on the Health Care Industry, in an Interim Report, issued the Patients' Bill of Rights and Responsibilities. Donna E. Shalala and Alexis M. Herman co-chaired the 34-member Commission.

The Patients' Bill of Rights and Responsibilities has three goals: to strengthen consumer confidence that the health care system is fair and responsive to consumer needs; to reaffirm the importance of a strong relationship between patients and their health care providers; and to reaffirm the critical role consumers play in safeguarding their own health. The Commission articulated seven sets of rights and one set of responsibilities:

The Right to Information. Patients have the right to receive accurate, easily understood information to assist them in making informed decisions about their health plans, facilities and professionals.

The Right to Choose. Patients have the right to a choice of health care providers that is sufficient to assure access to appropriate high-quality health care including giving women access to qualified specialists such as obstetrician-gynecologists and giving patients with serious medical conditions and chronic illnesses access to specialists.

Access to Emergency Services. Patients have the right to access emergency health services when and where the need arises. Health plans should provide payment when a patient presents himself/herself to any emergency department with acute symptoms of sufficient severity "including severe pain" that a "prudent layperson" could reasonably expect the absence of medical attention to result in placing that consumer's health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.

Being a Full Partner in Health Care Decisions. Patients have the right to fully participate in all decisions related to their health care. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Additionally, provider contracts should not contain any so-called "gag clauses" that restrict health professionals' ability to discuss and advise patients on medically necessary treatment options.

Care Without Discrimination. Patients have the right to considerate, respectful care from all members of the health care industry at all times and under all circumstances. Patients must not be discriminated against in the marketing or enrollment or in the provision of health care services, consistent with the benefits covered in their policy and/or as required by law, based on race, ethnicity, national origin, religion, sex, age, current or anticipated mental or physical disability, sexual orientation, genetic information, or source of payment.

The Right to Privacy. Patients have the right to communicate with health care providers in confidence and to have the confidentiality of their individually-identifiable health care information protected. Patients also have the right to review and copy their own medical records and request amendments to their records.

The Right to Speedy Complaint Resolution. Patients have the right to a fair and efficient process for resolving differences with their health plans, health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review.

Taking on New Responsibilities. In a health care system that affords patients rights and protections, patients must also take greater responsibility for maintaining good health.

Advice: Know your rights, and use them.

Read one of our access stories, or read more from the government source on your specific Medicaid and Medicare rights.

I need to be the sole focus of my exam: Patient privilege

D.J. Listort’s retort:

I resent the guilt trip laced behind the Ethicist’s advice to "find another way to do your fair share for the health-care community of which you are a member and from which you benefit" (in The NY Times Magazine of April 15). Because I do not wish to have residents or interns present during my examination does not mean I haven’t done my fair share by paying my (staggering) medical-insurance premiums or by waiting for what often is an interminable amount of time for my appointment.

I need the precious one-on-one with my doctors so that they and I may have a confidential and attentive session to discuss, diagnose and treat my ills. Why didn’t the doctor provide a form (what’s one more?) at the first appointment to cover a request to have residents present so that the rules, and my preferences, are clear before the examination starts? I’m sorry, but I need to be the sole focus of my exam, and I don’t need to be chided for insisting that I am.

Advice for patients: To guarantee privacy in your exam, discuss it with the receptionist when you arrive for the appointment.

Read one of our patient/physician partnership stories.