Real Men Don't Wear Gowns

Ken's rant:
I like to look silly – once in a great while, at Halloween, and Purim. But even then, I don't cross-dress.

I don't do dresses. And not nightgowns, negligees, chemises, and not even aprons, either.

So, hospital nurse, don't give me a johnny – one of those ridiculous open-to-the-back gowns with a drawstring and little chotchke designs.

There are 5,000 other hospitals in the country, and if you hand me a johnny, I'll haul myself out of your hospital bed and find a hospital that doesn't make me wear one.

Advice to patient advocates: Tell your clients to bring their own bathrobe or favorite pajamas to the hospital.

Read a very different story about a patient’s dignity in the hospital.

A strong step in the right direction: What Massachusetts Voters Did Not Say

Here's my letter to the editor after the election of Scott Brown to the U.S. Senate:

Massachusetts citizens have consistently supported the state's universal health insurance law. The most recent survey, in September, found that 79% want the law continued. The law has the support of Republicans and Democrats, including some prominent ones. The Republican front-runner in the gubernatorial race, Charles Baker, calls the law "a strong step in the right direction" and indeed, calls for expanding services, according to his campaign's website. Sen. Scott Brown voted for the law as a state senator, and in his recent campaign for the U.S. Senate, did not ask for its repeal. Republican Governor Mitt Romney signed the bill into law. Massachusetts' Republicans and Democrats generally support the law.

The meaning of Massachusetts voters' election of Scott Brown to the U.S. Senate is unclear – but it clearly does not show general dissatisfaction with universal health insurance as it is in effect here. It would be a tragic mistake, harming the health of tens of millions of Americans, to conclude that Massachusetts residents have spoken against expanded health insurance coverage.

Read Dr. Atul Gawande's opinion on the effects of Massachusetts’ near-universal health insurance coverage.

Advice: Forward this to your U.S. congressman.

Through my dying day, and beyond: Gay Culverhouse Player Outreach Program

Her father was the founder of the Tampa Bay Buccaneers football team, and she herself later served as the company president. Somewhere along the line, Gay Culverhouse took note of the frequent long-term disabilities that NFL players suffer, and she took it to heart.

In October, she testified critically to Congress' Judiciary Committee of the House of Representatives about the NFL’s lax policy toward concussions and overall player safety. She vowed publicly to set up an organization to seek out former players in need, arrange their doctor visits, and help complete their paperwork.

She delivered. The fledgling Gay Culverhouse Player Outreach Program first sent an advocate to help Jerry Eckwood, a popular running back for the Buccaneers from 1979 to 1981. Jerry, now 55 years old, is unable to go grocery shopping, handle his checkbook, function on his own, or often even to speak coherently. His doctor strongly suspects he has dementia, after Jerry’s multiple concussions as a football player.

Gay has worked quickly to build the nonprofit program, which is based in Tampa, Florida. "I have to be made obsolete. The NFL is hoping that I made a one-shot deal in Congress and now I’ll go away. I’m going to fund this through my dying day and beyond. This thing can't die when I die."

Gay's selflessness and drive are particularly laudable because she herself is terminally ill with myelofibrosis, a disorder of the bone marrow that causes severe anemia and kidney failure. Former players admire her toughness and compassion. Former All-Pro tight end Jimmie Giles said, "I've never heard of anybody in football stepping up to the plate like this. This lady, she's like Gandhi to us."

Read another NFL concussion story. Thanks to Alan Schwarz for the source story in the Jan. 22 issue of the New York Times.

Advice to health advocates: Live like Gay Culverhouse.

He clung to this wish: Fatal radiation overdose

Scott Jerome-Parks was raised in a conservative family in Gulfport, Mississippi, later moving to Toronto, and then New York City. There, he met his Canadian-born wife Carmen, a dancer, singer and aspiring actress. He took a job as a computer and systems analyst, at the southern tip of Manhattan.

Haunted by the deaths he saw up-close on September 11, 2001, he volunteered to work with the Red Cross near "the Pile." He developed what he initially thought was a nagging sinus infection, diagnosed two months later as tongue cancer. His doctor believes there was a link between his tongue cancer and the toxic dust from the collapsed towers, though the cause of his cancer was never proven.

Scott approached his illness as any careful consumer would, evaluating the treatment options before choosing a hospital. He chose a hospital that provided Intensity Modulated Radiation Therapy (IMRT), which it advertised as more precisely targeted, and so having fewer serious side effects, than conventional radiation therapy.

The first four radiation treatments were provided as prescribed. The medical physicist revised the treatment plan for the fifth session to better protect Scott's teeth from radiation damage, at the suggestion of Scott's doctor. Such a revision of the treatment plan is a time-consuming task. As the medical physicist tried to save the computer program containing the revised treatment, late in the morning of March 14, 2005, the system crashed, after appearing to save the changes first. An hour later, Scott's doctor approved the new plan. Half an hour later, the computer crashed again. Six minutes later, staff administered the first of several radioactive beams. They administered another round the next day.

Two friends – a layman and a nurse – noticed something wrong because of Scott's intense pain, and swelling throughout his head and neck, and asked the hospital to check on Scott. The hospital sent a psychiatrist. Scott received another round the next day. Several hours later, the medical physicist ran a test to see whether the radiation had been provided appropriately. Then she tested again, and tested a third time. A frightful mistake had been made: Scott's entire neck had been exposed, causing a large overdose of radiation. The damaged cells were not reparable.

Scott died in early 2007 at age 43.

The New York City hospital treating him for tongue cancer had failed to detect a computer error that directed a linear accelerator to blast his brain stem and neck with errant beams of radiation - not once, but on three consecutive days.

In a recent exceptionally thorough data analysis, the New York Times found that the complexity of this new technology has created new avenues for error – through software flaws, faulty programming, poor safety procedures, or inadequate staffing or training.

As he lay dying, he clung to this wish: that his fatal radiation overdose – which left him deaf, struggling to see, unable to swallow, burned, with his teeth falling out, with ulcers in his mouth and throat, nauseated, in severe pain and finally unable to breathe – be studied and talked about publicly so that others might not have to live his nightmare.

Read a happier radiation story. Thanks to Walt Bogdanich for the source story in the New York Times of Jan. 24.

Advice to patient advocates for patients undergoing radiation: Insist on a test by the medical physicist before radiation is used. The test is customary but is sometimes skipped, as it was here.

I was a good patient: Patient-doctor relationship

Nurse Practitioner Richard Ferris' story:

I am so damn tired of this...I am not my f----ing T cell count or viral load level and I wish to hell people would stop treating me like I am. It is degrading, and worse yet, it puts up roadblocks to communication between friends, medical providers, and the rest of the damn world.

I have been practicing AIDS medicine since the beginning of the epidemic. Today is very different and as a clinician I am a much happier man because of the advances in HIV therapy, but we have become a community that is still fixated on clinical numbers and not the person sitting in front of us and this had got to stop.

I recently felt compelled to change my AIDS doc because all I was a bunch of numbers to her. I was the "good" patient." She knew I took care of myself, was sober, worked out, and was nearly perfect with sticking to my meds. So I got the "greet them, treat them and, street them" kind of medical care all clinicians fall into now and then on a regular basis. So after numerous attempts of talking with her about my care concerns and not seeing things change I said the short version of the Serenity Prayer, which is "F--- it!", and found another provider who is wonderful. She treats me like a real person. I am a real person! She asks what is going on in my life and my numbers, while still important, are not the heart and soul of every visit.

I have had several other medical conditions overlooked because of my being a "good patient" that I had to handle myself. But I am lucky because I am an AIDS certified Nurse Practitioner and knew how to get the help I needed. What about the average person with HIV/AIDS without that sort of background? What happens to them? I assume they fall through the clinical cracks and suffer.

Maybe that is the lesson here: NEVER BE A GOOD PATIENT!

Read another story about an HIV patient who’s very aware of the relationship with his doctor.

Thanks to Richard for his post, at Richard’s POZ blog.

She has found such a source of strength: Empathy for SMA type-1 sufferers

Q. My cousin and I are in our late 20s and quite close. This past year, her newborn son was diagnosed with a condition called SMA type-1. It is a form of muscular dystrophy and is terminal. Babies born this way are missing a gene needed to build and maintain muscle. There is no cure, and babies rarely survive their first year.

I am in awe of my cousin's strength. She has developed a large network of friends on the Internet, who all have, or have lost, a child to this illness. Every time we talk on the phone or see each other, she updates me on all the babies who have passed away since the last time we spoke. Talking about these things helps her cope and prepares her for what is coming.

My problem is that I'm empathetic by nature and am becoming increasingly overwhelmed hearing about all these babies passing away. How do I curb what I am feeling so that I can keep listening for as long as she needs me? Signed, Overwhelmed

A: She doesn't need to talk with you about these deaths because she has this large support network. I would tell her it's become too much for you to hear of all this loss, and that you are grateful she has her support group, all of whom are experiencing the same thing. You are not really part of their "club" and must ask to be left out of the loop of updates. That said, tell her you will do anything you can for her, and you love her as always. You might add that it's wonderful she's found such a source of strength in fellow sufferers.

Read another story about empathy for a medical condition. Thanks to columnist Margo for the source story in today's Boston Globe.

It was easily preventable: Luis Fermin Tenorio and H1N1

In 1991, a young boy in Peru became the last child in the entire Western Hemisphere to get polio. He hadn't been immunized, though the vaccine was available. Now about 21 years old, Luis Fermin Tenorio had been only a toddler at the time. That life-changing event was easily preventable.

Now we are in the midst of an epidemic that has killed 11,000 people in the U.S., according to the Centers for Disease Control An inexpensive vaccine is available to everyone through doctors' offices, CVS, Walgreen's, and many other places.

Don't let someone in your family risk suffering or dying needlessly from the H1N1 virus!

Advice: Get vaccinated against the swine flu now.

Read another vaccination story.

We've created that: Consumer Health Quality Council's Accomplishments in 2009

As the council president, I had the pleasure of making a presentation about the progress made in 2009 by our Consumer Health Quality Council, at a meeting of the consumer council and our advisory council on Wednesday, organized by Health Care for All:

We've made a lot of progress this year, thanks to the work by you and our other council members. As we start 2010, the signs point to continued progress. To name just three examples both of how well we’ve done in 2009 and how we’re set up to succeed in 2010:

You told me, this time last year, that our biggest priority was the implementation of Chapter 305. We've had notable success there. For example, consider the two work groups that I know the best from my own work: Rapid Response Teams and Patient/Family Advisory Councils. For the first time in Massachusetts, and indeed anywhere in the U.S. to the best of our knowledge, there is an early tabulation of the statewide use of hospitals' rapid response methods to promptly rescue deteriorating patients. We've created that! In doing so, we discovered the first family-initiated rapid responses. We have an emerging strategy of encouraging hospitals through recognizing the ones who've reported active use of the often life-saving rapid responses.

Second, our PFAC (Patient/Family Advisory Council) work group has also produced a first-of-its-kind useful public statewide accounting – of hospitals' plans for PFACs, and a listing of the first changes in extended visiting hours, maps of cardiac care milestones for an inpatient, washer/dryers for patients' parents, to name only three innovative changes. A strategy of publicly commending these innovative hospitals can spread these changes through the state in 2010 – with your continued help. Third, we've benefited from our new members, with more new skilled people coming on board soon. Our new members have been particularly active through our work groups. Kim Slack and others will likely join us in 2010, adding to our capacity.

Read another story about the work of our Consumer Health Quality Council in 2009.

A lot of others worse off than him: Post traumatic stress disorder among veterans

Army psychiatrist Nidal Hassan apparently committed a mass shooting at an Army base in Texas. If it turns out that Major Hassan did in fact break partly under the stress of the job and impending deployment, many veterans would not be surprised.

"If this guy can go over the edge, imagine what it is like for the actual combat troops who have been through four or five deployments," said Bryan Hannah, 22, a disabled Iraq war veteran from San Marcos, Texas, who was stationed at Fort Hood until he was discharged a year ago because of post-traumatic stress disorder (PTSD) and other injuries.

He added, "There are a lot of others who are worse off than him."

Advice: Bring our soldiers home before more horrors like this occur.

Read a PTSD story with a happier ending. Thanks to the writers of the New York Times for this story, published Nov. 8, 2009.

I CAN'T TASTE ANYTHING: Zicam Cold Remedy Nasal Gel

Charlene's friend’s story:
I want my friends and loved ones to know what has happened to me in hopes that it will never happen to you or anybody you care about.

About 10 days ago, I felt a cold coming on; so before I went to bed I used Zicam Cold Remedy Nasal Gel. It's supposed to help you "get over your cold faster." Immediately after I sprayed it into each nostril I felt the most horrific burning sensation imaginable. It literally felt like I had sprayed pepper spray directly into my brain. It burned all the way to the top of my skull. Mynasal passages swelled, my eyes watered – the burning lasted all night long into the next day. 
 


After about a day, I realized I couldn't taste anything and I thought, "Wow - I must really have a bad cold." Then I noticed that I couldn't smell coffee brewing, couldn't smell my perfume when I put it on, couldn't smell the popcorn I burned, couldn't smell my favorite candle. Ipanicked and starting smelling everything that I could find that had really strong odors – ammonia, finger nail polish remover, bleach, etc. I couldn't smell ANYTHING!

I started tasting everything that had really strong tastes such as HOT salsa, raw red onions, Doritos, coffee. I couldn't taste ANYTHING! 
 
I told my mother about this and she said, "Oh, I've heard Zicam can affect your Olfactory nerve."

I went online, typed in "Zicam side effects" and bam - up popped all sorts of web sites with people reporting the same thing I experienced. It seems that this past June, Zicam pulled the swabs for adults and children off the shelf but not the nasal gel. 
 


I went to my ENT and he said the Zicam had basically "FRIED" my Olfactory nerve and the results are most likely permanent. He put me on a strong dose of a steroid called Prednisone in hopes of recovering ANY bit of the nerve damage but he told me to "take this and pray." He said he had read about the side effects of Zicam and couldn't believe it is still on the shelf. It isn't FDA approved.

I am taking the Prednisone and praying but nothing is happening. I LITERALLY CANNOT SMELL OR TASTE ANYTHING! I can tell if foods are hot or cold, I can tell the consistency and I can faintly detect if it is salty but that is it. 
 


PLEASE, PLEASE, PLEASE pass this on to everyone you care about. I don't want this to happen to ANYONE else!!!!!!!!!! And if you have Zicam in your medicine cabinet—THROW IT AWAY!

Read the FDA Advisory.

Read a story about a very different kind of treatment for a nasal condition. Thanks to Charlene Casucci for sharing this story.

To our everlasting gratitude: Advance directives

Ginny Nagy's story:

To the editor,
Your article about "drug-induced sleep" and "terminal sedation" was especially timely for me.

My mother passed away peacefully on Dec. 10 in Nathan Adelson Hospice here in Las Vegas. She had fallen at home the week before and broken three ribs, lacerating her liver in the process. She was 94.

It became increasingly clear that she would not recover from the resulting complications. Our goal was to make her comfortable and free of pain, which thanks to her and the hospice, we did.

The process of "terminal sedation" was gently presented to us. Kind doctors and nurses helped us every step of the way to our everlasting gratitude.

During this time, my sister and I faced tough decisions, but these were made at every turn with my mother's wishes having been clearly stated in writing. Both of our parents had put in place written advance directives. So I was saddened to read in your article that many families facing these situations still do so without knowledge of the family member's desires.

At the end, my sister and I, while suffering profound grief, believed that we made the right choices and that our mother died as she would have wanted.

Advice: Save your children the agony of making life-and-death decisions on your behalf at a time of huge stress by writing an advance directive.

Read a story about a hospice musician. Thanks to Ginny, and the editor of the New York Times for publishing Ginny's letter today.

Who knew every inch of him: Donating your body to medical science

Dana Robinson is now a medical student, the daughter of a retired family doctor, Aubrey Gould, who passed away in the fall and had donated his body to UMass Medical Center.

At the conclusion of the gross anatomy class in the spring, most medical schools have a memorial ceremony for the cadavers. UMass invites the families of the donors to attend, as medical students honor what they call the "ultimate gift." Dana explains why she attended the ceremony: "I wanted to know who worked on my dad – who knew every inch of him, without knowing who he was." She said that meeting the students who dissected her father's body was one of the best experiences of her life. "They took care of him and they treated him with respect. I could sense how much it meant to them," she said.

Advice: Arrange now to donate your body to a medical school or organ transplantation center so others will benefit.

Read an organ donor’s story.

Thanks to Tara Ballanger for the source article in the G Section of the Boston Globe of August 17.

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.

In a peculiar position: Patients' expectations of surgeons

I’m re-reading Dr. Oliver Sacks' memoir of his own severe leg injury as a young athletic hiker, A Leg to Stand On. This excerpt comes after a surgeon has performed technically successful surgery on the broken leg, but leaving the young Dr. Sacks with no feeling whatsoever in his leg, nor any ability to move it. Dr. Sacks has explained the story to his beloved feisty elderly aunt, who advises him:

"You're going to have to be very clear and strong and bold. You're also going to have to bow your head, and be humble, and acknowledge that there are many things that pass the understanding. You mustn't be arrogant – and you mustn't be abject.

"And you mustn't expect too much from the surgeon. I'm sure he's a good man, and a first-rate surgeon, but this goes far beyond the province of surgery. You mustn't get angry if he doesn't understand completely. You mustn't expect the impossible of him. You must expect, and respect, limits. He'll have all sorts of limits – we all do. Professional limits, mental limits and emotional limits, most especially…." She stopped, arrested by some recollection or reflection.

"Surgeons are in a peculiar position. They face special conflicts. Your mother was a dedicated surgeon, and a very gentle sensitive soul, and it was sometimes difficult for her to reconcile her human feelings with her surgery. Her patients were very dear to her, but as a surgeon she had to see them as anatomical and surgical problems. Sometimes, when she was younger, she seemed almost ruthless, but this was because her feelings were intense: she would have been overwhelmed by them, if she hadn't maintained a rigorous distance. It was only later that she achieved a balance – that essential balance of the technical and the personal.

"Be gentle, Bol! Don't react to Dr. Swan. Don't call him 'the surgeon.' It doesn't sound human! Remember he’s human – as human as you are. All too human, probably, and even shyer than you are. All the trouble starts when people forget they're human."

Read another story about patients’ expectations.