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Friday, August 31, 2007

He waited to be rescued: Lance Armstrong’s definition of courage

Lance tells this joke in his memoir:

A man is caught in a flood, and as the water rises he climbs to the roof of his house and waits to be rescued. A guy in a motorboat comes by, and says, "Hop in, I’ll save you."

"No thanks," the man on the rooftop says. "My Lord will save me."

But the floodwaters keep rising. A few minutes later, a rescue plane flies overhead and the pilot drops a line.

"No thanks," the man on the rooftop says. "My Lord will save me."

But the floodwaters rise ever higher, and finally, they overflow the roof and the man drowns.

When he gets to heaven, he confronts God.

"My Lord, why didn’t you save me?!" he implores.

"You idiot," God says, “I sent you a boat, I sent you a plane.”

In a way we are all just like the guy on the rooftop. Things take place, there is a confluence of events and circumstances, and we can’t always know their purpose, or even if there is one. But we can take responsibility for ourselves and be brave.

We each cope differently with the specter of our deaths. Some people deny it. Some numb themselves with tequila. I was tempted to do a little of each of those things. But I think we are supposed to try to face it straightforwardly, armed with nothing but courage. The definition of courage is: the quality of spirit that enables one to encounter danger with firmness and without fear.

Read one of our athlete hero stories, or read more from It’s Not about the Bike.

Thursday, August 30, 2007

He was the poster child for the Muscular Dystrophy Association: Michael Spencer

Michael Spencer, 33, was diagnosed with muscular dystrophy when he was 4, started using a wheelchair at 9, and lived a full life that inspired others. Twice he was a poster child for the Muscular Dystrophy Association (MDA).

Michael died Saturday in his Lorain, Ohio home, of respiratory failure that was a complication of his disease, said his mother, Gladys. He had duchenne muscular dystrophy, a neuromuscular disease in which muscles become progressively weaker, she said.

In 1981, he was the Ohio Poster Child for the MDA, and in 1982 was named the Northeast Ohio MDA Poster Child. He made many television appearances and was involved in several community projects to help raise money for the MDA.

He was 6 when he participated in several MDA "boot drives" conducted by Lorain, Ohio firefighters. One year he traveled to Washington, D.C., with his family and helped firefighters there with an MDA boot drive.

At 17, Michael received the Northeast Ohio MDA's Personal Achievement Award on March 25, 1992. The award recognized him for his accomplishments and inspiration to others afflicted with any of the 40 neuromuscular diseases.

Advice: Telling your story publicly, like Michael did, can help others with your disease.

Read one of our stories on a survivor of Lou Gehrig’s Disease, or read more from the source article in the Cleveland Plain Dealer by Wally Guenther on August 29.

Wednesday, August 29, 2007

My illness was starkly revealing: Cancer survivor Lance Armstrong

Lance's realization:

My illness was humbling and starkly revealing, and it forced me to survey my life with an unforgiving eye. There are some shameful episodes in it: instances of meanness, unfinished tasks, weaknesses, and regrets. I had to ask myself, "If I live who is it that I intend to be?" I found that I had a lot of growing up to do as a man.

I won't kid you. There are two Lance Armstrongs, pre-cancer, and post. I returned a different person, literally. In a way, the old me did die, and I was given a second life. Even my body is different, because during the chemotherapy I lost all of the muscle I had ever built up, and when I recovered, it didn't come back in the same way.

Cancer was the best thing that ever happened to me. I don't know why I got the illness, but it did wonders for me, and I wouldn't want to walk away from it. Why would I want to change, even for a day, the most important and shaping event in my life?

Odd as it sounds, I would rather have the title of cancer survivor than winner of the Tour [de France], because of what it has done for me as a human being, a man, a husband, a son, and a father.

Read another of Lance’s stories from his memoir, It’s Not about the Bike.

Tuesday, August 28, 2007

You have to believe, and you have to fight: Cancer survivor Lance Armstrong on courage

When I was 25, I got testicular cancer and nearly died. I was given less than a 40% change of surviving, and frankly, some of my doctors were just being kind when they gave me those odds.

Children [with cancer] have the ability to ignore odds and percentages. Maybe we can learn from them. What other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.

After I was well again, I asked Dr. Nichols what my chances really were. "You were in bad shape," he said. I was one of the worst cases he had seen. I asked, "How bad was I? Worst 50%?" He shook his head. "Worst 20%?" He shook his head again. "Worst 10?" He still shook his head. When I got to 3%, he started nodding.

Lance's Advice: Anything's possible. You can be told you have a 90% chance or a 50% chance or a 1% chance, but you have to believe, and you have to fight. By fight I mean arm yourself with all the available information, get second opinions, third opinions, and fourth opinions. Understand what has invaded your body, and what the possible cures are. It’s a fact of cancer that the more informed and empowered patient has a better chance of long-term survival.

Monday, August 27, 2007

People live, and in the most remarkable ways: Lance Armstrong, cancer survivor

Lance Armstrong on heart:

People die. But there is another truth, too. People live, and in the most remarkable ways. When I was sick, I saw more beauty and triumph and truth in a single day that I ever did in a bike race – but they were human moments, not miraculous ones. I met a guy in a fraying sweatsuit who turned out to be a brilliant surgeon [Dr. Scott Shapiro]. I became friends with a harassed and overscheduled nurse named LaTrice [Haney], who gave me such care that it could only be the result of the deepest sympathetic affinity. I saw children with no eyelashes or eyebrows, their hair burned away by chemo, who fought with the hearts of [five-time winner of the Tour de France Miguel] Indurain.

Advice: Read Lance Armstrong’s book, It’s Not about the Bike: My Journey Back to Life.

Read another athlete cancer survivor story.

Sunday, August 26, 2007

The neurosurgeon relied on memory, not the CT Scan: Wrong site brain surgery

An 86-year old man, who has not been identified, came to the emergency department at a hospital in Rhode Island on July 30 with increasing lethargy three days after a fall. A CT scan indicated he had bleeding on the left side of his brain, and he was transferred to the operating room for surgery to drain the blood.

A nurse practitioner did not record which side needed surgery in the patient’s medical history nor on the consent form signed by the patient’s relative.

When a different nurse — a circulating nurse in the operating room — pointed out that the information was missing, the surgeon wrote down the side where he would operate on the consent form.

The surgeon didn’t confirm his memory by checking the CT scan, health inspectors found. He wrote down the wrong side on the form, and then cut open the wrong side. When he realized his error, he operated on the correct side.

The patient 86-died Saturday, and the medical examiner's office is still trying to determine whether the surgical error contributed to his death.

The hospital's chief quality officer said that the staff's sense of urgency about caring for the patient had superseded the rules.

Of course, as the quality officer added, emergencies are "exactly where policies and procedures need to be as tight as possible."

Cooper said that she believed someone in the operating room had questioned whether the correct side was being cut, but the surgeon was confident he was right.

Advice: Elderly hospital patients should bring an advocate.

Read another wrong side surgery story, or read more from the source article by Felice Freyer in the August 24 issue of the Providence Journal.

Saturday, August 25, 2007

She opened a laundry to support her hotline: Recovery from addiction

Wu Xuemin, a 40-year-old woman in Baotou City, in the Inner Mongolia Autonomous Region, was sent to a local agency to have treatment for her drug addiction.

Three years later, she has been successfully running a special hotline to help other addicts.

"When I was first in the anti-addiction clinic, my whole body ached, and I seemed to have a thousands ants crawling over me," she recalled.

Wu conquered her addiction with the help of the police officers and her roommates at the center. Afterward, she pledged to start a new life by helping other drug addicts to cure their habit.

The former addict opened a hotline called "Xuemin Chat Room" to talk with addicts and their relatives. The hotline received hundreds of calls in the first year.

When the local authorities heard that Wu had run into financial difficulties in running the hotline, they helped her by providing a new office and a computer. Wu has also opened a laundry to support her hotline and to give former addicts a job.

"I hope more and more brothers and sisters who want to give up their addiction will get in touch with me," she said, "I will spare no effort to help them."

Spare no effort to help your friends struggling with addiction, like Wu Xuemin has.

Read one of our addiction recovery stories, or read more from the source article from the Xinhua News Agency.

Friday, August 24, 2007

I never needed it in the first place: Unnecessary surgery - C section

When Barbara Stratton of Baltimore, Maryland, looks back at the birth of her son, Charlie, now 7, she’s angry — angry she had a surgery she believes she didn’t need. Babies delivered by C-section are at higher risk for complications, including breathing problems. Barbara said her obstetrician induced labor a week before her due date because she feared the baby would be too large to deliver if they waited for her to go into labor spontaneously. But even after being induced, her labor still didn’t progress, and she ended up with a Caesarean section. Her baby weighed 8 pounds, 7 ounces — far smaller than the obstetrician had predicted.

"I never needed the C-section in the first place," said Barbara.

The U.S. government and many obstetrical experts are working hard to reduce the number of women having C-sections. In 2004, 29% of babies in the U.S. were born by C-section, an increase of more than 40% since 1996. C-sections involve risks to the mother, including infections, bleeding, and pain. Babies born via C-sections have more breathing problems right after birth, according to the Office on Women's Health at the U.S. Department of Health and Human Services. Many experts think as many as half of all C-sections are unnecessary, the women’s health office said.

Barbara said that because of surgical complications she was in pain every day for a year and a half after her son was born. She became depressed.

"I was in pain every time I rolled over, every time I got out of bed, every time I got out of a chair," Barbara said. "It affected the quality of my mothering. I had trouble bonding with my son."

After her own disappointing birth experience, Barbara became a doula - a birth assistant who can advocate for a woman in labor.

Advice to pregnant women: Don’t get induced unless medically necessary. Studies of first-time moms show that 44% of those who are induced end up with a C-section but that only 8% of those who go into labor spontaneously end up with a C-section. Doctors say many times, inducing women way before the cervix is ready can lead to unproductive labor, which then necessitates a C-section.

Read a sextuplet story, or read Elizabeth Cohen’s source story.

Thursday, August 23, 2007

Now he looks for another kind of high: Crystal meth recovery

Joe Duavit says he turned to crystal meth, or speed, in college to help study for exams. But the powerful upper also gave him a high, and an addiction that consumed him. He began to steal from his family to support his habit, going on binges that would last for days. "I ended up in a straitjacket in a psychiatric ward," says Joe, who in 1992 finally conquered his addiction. He then went to work for Habilitat, a drug treatment center in Kaneoho, Hawaii. The urge to take the drug again was the most difficult part of the recovery process, Joe says.

New research may help explain why drug abusers struggle so much with the compulsion to take such a risky drug again and again. A scientific study now suggests that compulsion can be traced back to damage to a part of the brain involved in making good decisions. Yet people such as Joe do recover -- often with the help of therapy. Studies also now suggest that the brain may heal itself after a person stops abusing a drug, a finding that indicates that recovery may get easier as time goes on.

Joe didn't notice any memory problems after he quit meth. But he did have to learn how to take pleasure in things that many people take for granted. He says he had to learn how to get satisfaction from working hard toward a goal, such as getting a college degree. And, over time, Joe did experience a healing, in his case one that freed him from a seven-year addiction to meth. Now as a drug treatment counselor, he looks for another kind of high, one that he gets from helping others break free of drug addiction.

Advice to people struggling with addiction: Look for a better high in helping people, like Joe did.

Read another of our addiction recovery stories, or read Dr. Don Miller’s source story, from the USA Today of April 18, 2002.

Wednesday, August 22, 2007

The day after my operation, my work in patient advocacy began: A prostate and kidney cancer survivor

Winston Dyer's story:

On May 17, 1995, I underwent a radical prostatectomy to remove my prostate gland at Long Island College Hospital in New York City. The next day, my work in patient advocacy began from my hospital bed with my first radio interview. My friend, who is a host on a Caribbean radio show, called me while I was in the hospital to see how I was doing. While we were on the phone, we decided to go on the air and answer questions from listeners about prostate cancer and promote awareness of the disease. I quickly became the go-to guy for Caribbean men all over the city who are experiencing prostate problems.

Now I'm a 12-year prostate cancer survivor and a six-year kidney cancer survivor. I'm the founder and chairman of Arianna Prostate Cancer Community Outreach.

There isn't a rule book on how to be a patient advocate. Each case is different, so there's no set pattern to follow. One kind of patient advocate is someone who offers assistance to patients to improve their care and quality of life. It means being there for people and supporting them in the best way you can. As you begin this work, you'll learn how to best advocate for others.

Winston's Advice: Your advocacy has to come from your heart.

1. Take advantage of every opportunity. When someone asks you to talk about your experience with cancer, take that chance to raise awareness or help a patient. For instance, three months after my surgery, my urologist, Ivan Grunberger, asked me to speak to a newly diagnosed prostate cancer patient. I visited his house, where I met his wife and answered many questions the couple had about the disease and life after prostate cancer.

2. Make yourself available. Accompany patients to their first doctor visits. As a survivor, you can help explain what the doctor is saying and even ask questions the patient may be afraid to ask.

3. Be patient and understanding. A person who is scared by a recent diagnosis may ask you many questions, at all hours of the night. If possible, you may want to have a separate telephone number for your advocacy work.

4. Help dispel myths. Some patients may have misconceptions about cancer and its treatment. Provide them with information to help separate fact from fiction. Also, encourage participation in clinical trials, which may afford patients greater access to state-of-the-art therapies.

5. Network and make connections. The relationships you build with medical experts will benefit you when you’re helping patients. Get to know the physicians in well-known institutions. Pick their brains and ask them to go over a case history. It's also important to create warm relationships with the staff in a hospital's financial aid office. You’ll need them when representing the poor and uninsured.

6. Get involved in support and advocacy organizations. This is a must for those of us who are interested in advocacy. You'll be a better patient advocate by volunteering in a leadership capacity in a support group or other organization. I worked at CaPCURE for several years, which is an organization that funds prostate cancer research; it's known today as the Prostate Cancer Foundation.

Read another of our cancer survivor stories.

Thanks to our source, Kathy Meade of the Prostate Cancer Advocacy and Action blog.

Tuesday, August 21, 2007

Son of privilege: Moyers’ book on addiction and recovery

William Cope Moyers has just published Broken: My story of addiction and redemption.

Readers disagree greatly about it:

Gladys' review:
Broken educated me about the addict, what living as an addict must really be like. As the parent of an addict, I read Broken with horror and frustration, but finished it with hope. Moyers' position on treatment and addiction as the misunderstood disease made me want to become an advocate for helping change attitudes and stances about the disease of addiction in the medical and insurance arenas.

From Stephen’s review:
God bless anyone who, one day at a time, keeps in remission the terrifying fatal disease of cocaine addiction! This memoir, at times gripping and moving, is so full of grandiosity and self-congratulation that one is left wondering about the motives for its publication. It would seem less likely to be a clarion to change public perceptions of alcoholism and drug addiction as a "look at me--whee!" account of a spoiled son of privilege whose errant lifestyle led him to a vaunted executive position at Hazelden, one of the most prominent alcohol and drug rehabiliation centers in the world!

J. Siri's review:
Even though there were many relapses William Cope Moyers did what he had to do to stay clean and sober. It is a great success story of recuperation, love and patience.

I am particularly surprised by his wife, who I believe gave him all the support needed. She really understood that it is a disease, not just an addiction. Congratulations! You are truly an inspiration to all!

From Margaret's review:
It was riveting on many levels. However…how is it that a person with fragile sobriety (3 relapses) of such short duration (1 year) lands an executive position with a high profile recovery program (Hazelden) he could not successfully complete? Could it be his last name? (Thanks, Dad!) And shame on Hazelden too, if the facts are as Moyers relates: he knew nothing about policy, but they gave him an interview anyway. Has that happened to you in your chosen field lately?

Advice: Let’s read the book.

Read another story of recovery from addiction, or read the reviews at Amazon.

Monday, August 20, 2007

She saved the lives of her twins: A misdiagnosis, cerebral palsy and dopa-responsive dystonia

When Joe and Retta Beery welcomed Noah and Alexis into the world 11 years ago, the babies seemed as healthy as their older brother. But within a year, they were diagnosed with cerebral palsy. As time passed, the children progressively became sicker and weaker. Retta became convinced that Noah and Alexis had something other than cerebral palsy, a non-progressive disorder that affects muscle control and is often linked to prenatal brain damage.

The doctors disagreed. But Retta began spending several hours a day poring through medical literature, looking for a name for the disease that robbed her children of sleep, turned their muscles into rubber bands and caused them to cry incessantly and vomit regularly.

"I had been doing my own research for two to three hours a day for several years," Retta said. "I came across an article about a rare disorder that is often misdiagnosed as CP."

Alexis, who suffered more severe symptoms than Noah, experienced dramatic developmental regression. By age 5, she had trouble walking, sitting and swallowing. Her body stiffened with tremors and her eyes vacantly rolled backward, all classic symptoms of dopa-responsive dystonia, a treatable genetic condition caused by a dopamine deficiency in the brain. Dopamine-deficient brains are unable to transfer nerve impulses between nerve endings and have difficulty converting thoughts into actions.

Specialists were hard to find. Retta located the doctor quoted in the article and took the kids to Chicago to visit him. He promptly confirmed Retta's suspicions and gave the twins Sinemet, a drug that stimulates dopamine production. Within hours, Alexis' muscle control radically improved and the little girl who was hidden behind the contorted movements began to emerge. Noah, too, saw remarkable improvement shortly after taking the drug.

These days, they are normal fifth-graders, thanks to daily doses of dopamine-stimulating medication.

"They're doing everything now," says Retta. "Noah has been playing baseball and doing well academically. And Alexis beat the elementary school track record for the 100-meter dash last year. She loves to run."

Retta, who calls the transformation a miracle, is promoting awareness of the disorder, which she suspects may not be as rare as doctors think. Since an article appeared in Woman's World in June 2006, Retta has received calls from as far away as Canada from people with similar symptoms. She has spent countless hours sharing information about the disorder and treatment, which she says can be tricky.

"I've had a lot of opportunity to reach out to people who have been misdiagnosed and share our hope with them."

Now her discovery has ignited a passion to help others with the same rare disorder. Their story will get national media exposure again as the focus of Discovery Channel's Mystery Diagnosis. The episode will air at 10 p.m. Sept. 3 and will be repeated throughout the week.

For more information about the Beerys and dopa-responsive dystonia, visit www.thebeerys.com.

Advice: If you doubt the doctor's diagnosis, you can investigate other possible diagnoses, e.g., here.

Read another girl’s misdiagnosis story with a happy ending, or read Susanne Tso’s source story.

Sunday, August 19, 2007

I never thought I could: A drug court graduate

Trisha Nudd, 30, had struggled with an addiction to crack-cocaine for years before she took an opportunity to become sober in Angelina County Drug Court 2 1/2 years ago.

On July 19 she accepted a certificate of completion from the program, along with four others, marking a continuous year of sobriety. Trisha offered other participants in drug court who are struggling with addiction advice on what helped her get through hard times. She said her experience in drug court not only helped her stay off drugs, but give birth to a healthy girl a year ago, address other addictions and develop a personal relationship with God.

"I never thought I could," she said.

Angelina County Drug Court coordinator state district Judge Paul E. White runs the drug court. Trisha credits him for her success, among others.

Trisha's Advice: "You have to be honest with yourself and step up to the plate and get help."

Read one of our substance abuse recovery stories, or read more from the source article by Jessica Savage.

Saturday, August 18, 2007

The midwives’ traditional methods were superior: Infant mortality and medical error

Midwife Filomena’s (CNM - Certified Nurse Midwife) story:

I had returned to Brazil after receiving my public health degree in the U.S. I was invited by the Organization of Indigenous Nations in Brazil to assist in organizing a health training for indigenous health agents in the south west Amazon in efforts to help reduce the rate of infant mortality in those communities. For the most part, these communities were healthy– they farmed their own food, did not use refined sugar, had plenty of game and fish and clean water. Nevertheless, many of their newborns were dying, and we had to find out why.

I discovered that scissors had been introduced there recently, and were highly prized as something new – shiny, sharp, metal, with many uses. Midwives had now begun using scissors to cut newborns’ umbilical cords. But they had no concept of Western germ theory or sterilization as we understand them, and anyway, it’s not so easy to find rubbing alcohol to sterilize scissors in the middle of the rain forest! In earlier times, midwives had used a special shell, sharpened long and carefully against a whetstone, to cut the umbilical cord. The slow grinding of the shell’s edge creates enough heat and friction to kill and remove bacteria, allowing for safe use by the midwife. Specific herbs were also placed over the cut umbilical cord to promote further healing. It was evident that the more modern use of the non-sterilized scissors caused tetanus infections that proved fatal. After we taught the midwives that their traditional methods were superior, their infant mortality rates improved greatly.

Advice: Remember that modern technology often may prove less effective than traditional methods.

Friday, August 17, 2007

I went wherever help was available: Recovery from addiction

Shivakumar’s story

I am a 37 year old recovering drug user. When I was 19, my friend and I had a road accident in which I broke my left hand. I was hospitalized at the same hospital where I was working. The pain was unbearable so the doctor gave me an intramuscular injection. For three hours there was no pain and the drug was giving me some high – which I was enjoying! When the drug wore off, I started feeling pain again, the high was gone, and my addictive personality was calling for me to take one more shot without the doctor’s knowledge. So I raided the hospital storeroom and took another injection.

For three years, I kept taking injections. My physical condition deteriorated to the point where I couldn’t perform my duties. Being around drugs at the hospital on a daily basis didn’t help, I came to realize, so I decided to move on.

Once out of work, I started to mingle with brown sugar users and very soon, I got hooked to it and cannabis. My drug use landed me in a local jail three times. It was there that I became ashamed of myself. I wanted it all to end. So I loaded a barrel full of drugs hoping for a last dying trip.

When I came to, I was in a hospital. After a few days, I was released and I started using again. I injected for six months but, this time, my family came to help me. They took me to TTK Hospital, where I enrolled in a three-month treatment program.

It didn’t take long for me to relapse. Again, the downward spiral which led to my second suicide attempt. After that, I went back to TTK and cleaned up my act, went to self-help group meetings where I got strength and hope and I went wherever help was available. With God’s grace and the precious help I found at TTK, I am recovering from drug dependence, staying away from all drugs for more than ten and a half years now, and still attending the self-help meetings on a daily basis.

Since I beat my addiction, I have been working at TTK’s Outreach Center for six and a half years as the buprenorphine project coordinator. My work and the pharmacotherapy allow people to get jobs, enjoy their family lives and maintain decent social relationships.

Advice: Look for ways to apply what you have learned the hard way to help others, as Shivakumar is doing.

Read a sad story about problem drinking, or read Shivakumar’s source story.

Thursday, August 16, 2007

To say I was amazed would be an understatement: Infant’s fever treatment

Michele O’Donnell’s story
My baby daughter Linda was quite prone to fevers, and it was one of those incidents that led me to call on the help of a far wiser and more mature woman than myself. My request was that she accompany me to the doctor’s office, but her response was something that I never imagined. She said that she would come right over and take me if I would do something while she was on her way. She told me to kneel next to Linda (who was lying on a beanbag on the floor, bright red and burning up with fever) and place my hands on her head and quietly and calmly tell the fever to leave her. Quietly and calmly was certainly the key here. If I remained in the frightened and agitated state which I was in when I called for help, I could not have accomplished this. As long as I was giving the appearance such power by my fearful reaction, the problem would remain. I was playing victim to the situation, having no idea the power available to me to correct it. At first I thought she was kidding me, but when I learned she was not, I said I would “try it” so long as she still was on her way to get us and go for real help if it didn’t work. As soon as she hung up, I did exactly what she requested. I found that if I sang a song or two for Linda first, we both would calm down. Within minutes after singing the songs and telling the fever to leave, it was gone. Usually when a fever breaks, the patient begins to perspire profusely, but this she did not do. It simply was not there anymore. When my friend arrived, everything was calm and under control. To say that I was amazed would be an understatement.

Michele’s advice:
Suffering, while it comes as a physical entity, does not necessarily need to be dealt with on that level. We are not in a helpless state when faced with it.

Read one of our baby stories with a happy ending, or read more from Michele Longo O’Donnell’s book, Of Monkeys and Dragons: Freedom from the Tryanny of Disease.

Wednesday, August 15, 2007

Do Not Suffer from Ailments You Cannot Afford: Recommended behavior for patients

Here’s Fortune Cookie #131,335:


You should consider it a privilege to contribute, however modestly, to the well-being of physicians and other humanitarians.

It is sheer arrogance to contract illnesses that are beyond your means.

The patient-doctor relationship is a privileged one, and you have a sacred duty to protect him from exposure.

Advice: A cup of tea and a funny fortune cookie are good for your health.

Read our April 1 post, or read other fortune cookies from our source.

Tuesday, August 14, 2007

That's when I can do the relationships: Innovative dentist-patient rapport

An interview with my wonderful dentist, A. Nonnie Mouse, DMD

Why do you have so many posters and cartoons on the ceiling?

At first, I put things on the wall. I asked a patient what they thought: “But the ceiling is where we spend most of our visit, looking up there.” But that’s daffy!, I thought. I went into a restaurant, saw the blue ceiling and stars, and I noticed that kind of thing at other restaurants too. Maybe in my practice it’ll be considered classy, like in the restaurants!

Why do you hand patients your own home-made educational materials at the end of the visit?

A patient told me, “You have a lot of good ideas [during the visit] but I don’t remember anything!”

So I developed a newsletter, that I write about two times a year [about oral health and wellness]. That’s what I hand out to patients, basically as an expression of my own craving for health and sanity. Because there are little ripples – for example, if you smile at somebody, it could make their day; who knows how it will ripple out? It may make a big difference in somebody’s life.

How’d you come to have patients listen to music they like during visits?

Early in my career, it just felt so good. I felt it would be an alternative to injections and all the stuff we do that’s intrusive. I must have picked it up through a personal experience, and it resonated.

Why do you do your own cleanings? I’m sure you give up some money by doing that.

It just came. That’s when I can do the relationships; I like that a lot. When people want to connect with me especially during check-ups, they share their feelings with me and me with them. I like that. If I share personal experiences, I feel good, and I get a lot out of it.

But when I do fixing, I don’t talk much—restorations, crowns, bite balancing - the reconstructive, repair part of dentistry - I’m a different person, in my own world.

What are your favorite days?

Check-ups, because I like people to become healthy, and I can shmooze more with check-ups. It’s fun.

My brother was seven years younger than me. He almost dropped out, because he had encephalitis. He felt abandoned, and almost died, but he came back. I had the same feeling of abandonment during my early years. Several years later, I thought, if I can help my brother to make it, that will be fine. That’s an underlying feeling. I won’t be truly healthy in this lifetime, but if I can help others to do that, that will be fine. That’s delightful to me; my presence is worth it. That, and sharing love, will make my life worthwhile.

Monday, August 13, 2007

He bolstered the lives of others: Terminal cancer

Norman Cousins: The judge's story

A physician in Sherman Oaks telephoned and identified himself as Dr. Avrum Bluming. He was calling about his patient, a judge, who was in the terminal stage of cancer and who was then at the Encino Hospital. He said the judge's mood was understandably bleak. All of his personal and professional life he had been known for courage, determination, and a positive outlook on life. His illness, however, had given him the psychology of fatalism. He told his wife and children that there was no hope and that he expected to die very soon.

Dr. Bluming told me that the effect of the judge’s mood on the family was catastrophic. He said that the judge's seeming willingness to give up without a fight was totally out of character. They physician was worried that the judge's wife might be vulnerable to serious illness.

On the way to the airport for the flight to China, I stopped off at the hospital. Before entering the judge's room, I met with Dr. Bluming, who told me that the judge had virtually stopped eating and was resisting intravenous feeding. At the present rate, he said, it was doubtful that he would survive more than two or three days.

When I entered the room, the judge bade me sit close to the bedside. He spoke in a hoarse whisper and it was difficult to follow what he was saying, but I picked up enough to learn that he had been a long-timer reader of the Saturday Review and had sympathetically followed its various enthusiasms and concerns.

I took his hand and thanked him and told him that few things in my life were more gratifying than to meet readers of the magazine. I asked how he felt. He closed his eyes and shook his head.

I said that Dr. Bluming had given me a briefing on his condition and that I was also concerned about his wife and sons and in fact, about all the people who loved him.

His eyes narrowed in a way that indicated he wanted me to explain myself. I said I understood that all his life he had been a fighter for things he had considered just and right.

He nodded and again he narrowed his eyes as though to find out what I was getting at.

I said that one of the things I had learned at the medical school was that attitude of the patient had a profound effect on members of the family. Their health could be jeopardized by negative attitudes of the patient. I said I hoped he would forgive me if I said that his family was anguished by the judge's apparent defeatism. Such defeatism might seem natural in anyone else, but in the judge…

The judge closed his eyes momentarily. Then he looked at me and uttered just two words: "I gotcha."

The sense of purpose in his whisper was unmistakable, as was the pressure of his handshake before I left.

When Ellen and I arrived in Hong Kong, the first thing I did was to telephone the hospital. Dr. Bluming went out to the nurse's station to take the call.

"Something is happening there that you’ll find difficult to believe," he said. "When the nurse began to rig up the intravenous device, the judge demanded that he be given breakfast on a tray. This was done. He got the food down, and kept it down. How he did that I'll never know. When his wife arrived, he called her to the bedside, then invited her to work on problems that come up in bridge games. The judge used to be a tournament bridge player. Where he got the energy to concentrate on bridge, I have no idea.

"This isn’t all," he continued. "After bridge, he asked for a robe and slippers, got out of bed, and went to the bathroom on his own. When the nurse tried to restrain him, saying she wanted him to use the bedpan, he waved her off and said he could take care of himself. He was crusty and strong-willed—just the way people had always known him."

I asked if this was any indication that the underlying situation had changed.

"Not as far as I can tell but it sure has made a difference in the lives of his wife and children. He’s going to survive this weekend and then some."

After I arrived in China, we were escorted into the interior of the country where international telephone facilities were not readily available. It was not until two weeks later, when we arrived in Shanghai, that I was able to telephone the hospital again.

This time, the judge’s wife went out to the nurse's station to take the call. Her voice was strong and cheerful

"The judge's spirits have been wonderful," she said. "He has had good talks with our sons. He follows the newspapers and makes his usual witty comments. He now takes walks in the hospital corridors and chats with other patients. The ultimate outlook hasn't changed, but the general atmosphere has. We are…well, a lot less dependent than we were."

The judge survived for several more weeks. It was a magnificent example of how the human spirit could make a difference-not just in prolonging one's life but in bolstering the lives of others. The judge's deep sense of purpose didn't reverse the disease—the cancer had spread so widely to his vital organs that it was only a question of time before it would claim his life. But he was able to prolong his life beyond the expectations of the physician. He was also able to govern the circumstances of his passing in a way that provided spiritual nourishment to the people who loved him. He died in character. This was his gift to everyone who knew him.

Hope, faith, love and a strong will to live offer no promise of immortality, only proof of our uniqueness as human beings and the opportunity to experience full growth even under the grimmest circumstances. The clock provides only a technical measurement of how long we live. Far more real than the ticking of time is the way we open up the minutes and invest them with meaning. Death is not the ultimate tragedy in life. The ultimate tragedy is to die without discovering the possibilities of full growth. The approach of death need not be denial of that growth.

Advice: You may be able to give something to others even during your toughest moments.

Read one of our hospice stories, or read more from the source, Norman Cousins’ book, Head First: The Biology of Hope.

Sunday, August 12, 2007

It worked great until she wasn’t doing so well: Physician/patient rapport

Yesterday’s post discussed a recent study of the usually ineffective attempts by doctors to build rapport with patients through self-disclosure.

Internist Howard Berkman, a co-author, ruefully disclosed his own story. He used to try to inspire older patients by telling them about his active mother, who walked two miles a day in her late eighties.

"It worked great until she wasn’t doing so well," he said. His mother is now 94. "By then, people got used to asking, 'How’s your mother?' I’d have to say, 'Well, she’s struggling.'"

Patients began worrying about his mother, and they wondered how good a doctor he was if he couldn't even keep his own mother healthy.

He had thought that talking about himself and his family strengthened his connection with patients, but he came to realize it wasn't such a good thing. "It created a complex set of issues, totally unnecessary in caring for these people."

Empathy, understanding and compassion work better than self-disclosure, the researchers found. Personal conversation is important, but doctors need to find time for it outside of patient visits.

Advice: If this is a problem, ask the office manager to mention it discreetly to the doctor.

Read Rita Rubin’s story in the June 26 USA Today.

Saturday, August 11, 2007

I didn’t even examine him: Physician-patient communication

One doctor – call him Dr. M – says he has always been circumspect when he talked to patients. But one patient who came for a visit five years ago for a physical exam was skilled at furniture building, Dr. M's hobby. The patient spent 40 minutes with the doctor. When he left, Dr. M looked at his notes. "I realized I didn’t even examine him," Dr. M admitted.

The patient was gracious when Dr. M called to apologize, saying, "We’ll just wait for next time."

A recent study in the Archives of Internal Medicine concluded this happens often, though maybe not for such a long time. Researchers studied 113 surreptitious audio recordings of office visits of test patients. The researchers discovered that doctors talked about themselves in a third of the visits and that there was no evidence that any of the doctors’ disclosures about themselves helped patients or established rapport. Patients were not comforted, and conversations got off track, the authors of the study found, wasting patients' time. "What’s shocking about this article is how often they moved from the patient’s concerns to their own,”"commented one physician chairperson of family medicine at an academic medical center.

Advice: If this is a problem with your doctor, leave a copy of this blog post in the doctor’s office as a gentle reminder.

Read Gina Kolata’s article in the June 26 New York Times.

Wednesday, August 8, 2007

We decided we were not going to stop fighting: A veteran’s suicide

Lance Corporal Jeffrey Lucey served in Iraq in 2003 and 2004, and returned home a changed person, according to his family. He had nightmares, insomnia, and deep depression, and began drinking heavily.

He told his sister he had picked out a rope to hang himself with. His family persuaded him to seek care through the Veterans Administration, where he admitted himself on May 28, 2004. He was placed in a locked psychiatric ward, but was released three days later. Two days later, he totaled the family’s car in what the family believes was a suicide attempt. A few days after that, his family persuaded him to return to seek treatment. He did so on June 5, but he was denied treatment, with no psychiatrist available, his family said. On June 22, he hanged himself in the basement of his family’s home in Belchertown, Massachusetts.

Now "the Lucey family has been an inspiration, a one-family advocacy group that has tried to bring a lot of visibility to suicide and to mental health issues for veterans," said Paul Riechkhoff, the executive director of Veterans of America. Veterans of America estimates that 117 Iraqi war veterans have killed themselves.

Jeffrey’s family has retained attorney Cristobal Bonifaz to file a lawsuit against the government in federal court in Springfield, Massachusetts. The attorney said the VA’s failure to recognize Jeffrey’s suicidal tendency amounted to negligence and medical malpractice by an overstressed, understaffed system.

Advice: Refer Iraq war veterans to Veterans of America.

You can read more in Charles Sennott’s story in the Boston Globe of July 27.

Tuesday, August 7, 2007

A glorious blend of forces: Presbyterian Health Plan and Whipple

Gordon Hendrickson is a retired administrator for the YMCA and the Spina Bifida Association, and now lives in Albuquerque, New Mexico.

Five years ago, at age 66, routine blood tests found something wrong with his liver. After more tests, he received a diagnosis of pancreatic cancer. His doctors thought they had detected it early enough for surgery to save his life. But he would have to go elsewhere for the rarely-performed surgery, they advised, because doctors in Albuquerque had little experience with the rare, complicated, and risky Whipple procedure he needed.

Studies show that treatment by experienced surgeons and hospitals with much relevant experience greatly increases the odds of survival for patients with pancreatic cancer, and indeed, for many other conditions.

Gordon’s internist, Dr. Kristine Bordenave, found a major cancer center in Houston that could safely perform the Whipple – M.D. Anderson. But his insurer, Presbyterian Health Plan, insisted on selecting from local surgeons who had each performed an average of only a single Whipple.

Since Presbyterian Health Plan had refused to pay for care at M.D. Anderson, Gordon used a new credit card for the deposit, and later got socked with $80,000 of medical bills.

He fought Presbyterian for a year, filing two appeals. He took his case to a state review board, where he had to represent himself because he could not afford a lawyer. He ultimately won the case, forcing Presbyterian to pay the whole bill.

In June, his five-year checkup showed he has been cured of pancreatic cancer. A glorious blend of forces – smart doctoring, luck, and his own wisdom and grit – had come together to save his life.

Advice: You don’t have to accept an insurer’s No as the final answer.

Read the source story in Denise Grady’s July 29 article in the New York Times.

Monday, August 6, 2007

He resumed his normal schedule: Vice President Cheney’s defibrillator/pacemaker and side effects

Vice President Dick Cheney, who has a long history of heart disease, had minor surgery on July 28 to replace the implanted heart device that monitors and adjusts his heart rhythm (an “implantable cardioverter-defibrillator”). An annual physical the month before had showed the battery had reached the level at which replacement is recommended.

Mr. Cheney was sedated for the procedure, which was performed Saturday morning. He walked out of the clinic at mid-day, returned home, and “resumed his normal schedule,’ his spokesperson said.

Mr. Cheney has had four attacks, the first at age 37. He has had a quadruple bypass surgery and two angioplasties to clear blockages in the heart arteries.

Men of the age of Pres. Bush and VP Cheney may be too stoic to admit they are experiencing even temporary periods of disability or physical weakness. This stoicism or denial may lead them to make poor decisions. It seems that these men ignored the subtle but powerful temporary after-effects of conscious sedation, when their judgment may well have been impaired, at our peril. In both cases in the last month, their judgment before surgery that they would be just fine, thank you, right afterwards, was also mistakenly self-confident.

Advice for those recovering from same-day surgery: Admit you are not fully yourself and give yourself the day off.

You can read more from the source article in the New York Times of July 29.

Sunday, August 5, 2007

I’d be dead if I’d stayed with the first provider: A cancer survivor

Karen Pasqualetto, age 36, is slight and dark-haired, with a soft voice. She has a law degree and a Type A personality, and worked for several technology start-ups. She made enough money to quit that career and do something she loved, teaching sixth grade at a Catholic school in Seattle.

After giving birth to Isabel by Cesaerean section last July, she noticed a lump under her ribs, the size and shape of a banana. Doctors noticed it but did nothing. Calling it a bruise, they sent her home.

Within a week she was back in the hospital, terribly sick – swollen with fluid, vomiting, so anemic she needed a transfusion, with severe abdominal pain. Tests found tht advanced Stage 4 colon cancer had already spread to her liver.

Crying, her doctor told her she had six months to live. Surgery was not recommended because the liver tumors were too extensive. Her doctor referred her to an oncologist for palliative chemotherapy to ease her symptoms rather than try to cure her.

Her health plan would only cover palliative care. But she had read enough about her disease to know that the proposed treatment plan did not include the full program of drugs typically recommended for Stage 4.

Her family urged her to look for other options. Her husband had a new job that provided better health coverage, and they switched to a different insurer.

"I’d be dead if I’d stayed with the first provider," she said.

She rejected the first oncologist after one visit and consulted the Seattle Cancer Care Alliance and Swedish Cancer Institute. Both recommended aggressive chemotherapy.

Her new oncologist, Dr. Philip Gold, told her "I have a lot of tricks up my sleeve. This is what we start with, and if it doesn’t work I have this, and then I have a clinical study." Karen said, "The feeling I got was, there was hope, and a plan of attack."

Karen recently celebrated her daughter’s first birthday.

Advice to cancer patients and their families: Aggressively seek second medical opinions from doctors who have extensive experience in treating patients with your disease.
Read the source story in Denise Grady’s July 29 article in the New York Times.

Saturday, August 4, 2007

Mother was convinced psychiatric meds were poison: Adverse drug reaction of diabetes

"Shyla" was a shy patient who ate nothing but white foods, and assaulted anyone who entered her airspace on the hospital ward. She was mute, but not uncommunicative. Some of her problem was her psychosis. Most of it was her mother, who was appointed by a court to be Shyla’s legal guardian and to monitor her medications. But her mother was convinced that psychiatric medications were poison. So Shyla would go home on weekend passes and return with all her pill bottles untouched, and without a shred of sanity.

This continued for months. Her mother brought a notebook to each visit that listed the side effects. Shyla’s doctors thought her mother was sadistic; she thought the doctors were evil experimentalists.

The doctors successfully persuaded a judge to remove the mother as a guardian and appoint someone else.

The guardian ensured Shyla took her meds. At first, Shyla flourished; she smiled, spoke, became lucid, joined a day program, began overnights in a residential house and was discharged. She seemed happy.

Then she got diabetes and required insulin. By then, studies had consistently found a link among her condition, antipsychotic medications, and diabetes. In 20/20 hindsight, it was clear that she had had an adverse drug reaction to the antipsychotic drugs . Her mother had been right.

As her doctor, Elissa Ely, concluded, "We doctors were innocent but at fault. The ground beneath professional feet should grow firmer over time – one ought to feel more certain of what one knows. But the more I know, the more I am afraid."

Advice: Have a healthy fear of possible side-effects, and use only the least amount of drugs to be effective.

Read Dr. Elissa Ely’s article in the July 24 NY Times.

Friday, August 3, 2007

I will remain forever grateful: Euthanasia and morphine

Dr. Darshak Sanghavi’s story

Afflicted with a rare, progressive scarring disease of the lungs, my father suddenly deteriorated one day and was hospitalized on a ventilator. Over weeks, my family endured repeated setbacks, as his lungs filled with fluid, his kidneys failed, and his heart weakened. His blood became acidic. Soon, fungus infected his bloodstream. His body ballooned, as if inflated with fluid. Doctors continuously infused intravenous narcotics, to deeply sedate him, and paralyzing agents to prevent any reflexive movements.

For my father, death would mean rest, or "shanti," in the Hindu-Jain tradition. For many people, death is not necessarily evil.

We met with my father’s doctors and agreed on a plan. On the day we decided to let my father die, our family filed into his room. Some prayers were said. The monitors were silenced. The doctors shut off the infusion of paralytic drugs, and injected a large dose of narcotics. The paralysis would still last for several hours. With a knowing nod to us, attending physician then left the room and my father’s nurse lingered behind.

She met my eyes and then my sister’s. Both physicians, we nodded back knowingly. Then the nurse reached over to the ventilator, and in an act of compassion for which I will remain forever grateful, she quietly turned the machine off.

Advice to families with gravely ill loved ones: Consider hospice care.

Read the source article by Dr. Darshak Sanghavi in the July 3 Boston Globe.

Thursday, August 2, 2007

He doesn’t want to read the list: Illiteracy, patient compliance, and the electronic medical record

Dr. Erin Marcus’ story

Last year, the community clinic where I work began requiring patients to go elsewhere for their blood and urine tests. For some patients, this has posed insurmountable obstacles, for shameful reasons.

One patient, compulsive about keeping his appointments with me, consistently fails to see specialists I recommend, and to have tests performed elsewhere. He always has an excuse.

And so I am stuck with a pleasant, complicated patient and no way to monitor the effects of the medicines I have prescribed.

Why is he non-compliant? Probably because he can’t read the map or directions I gave him, though he’ll never admit it – like many patients. In fact, one in seven adults in the U.S. has "below basic" prose literacy, i.e., they cannot read simple text. It is particularly hard for these patients to navigate the healthcare system, and their doctors are left without basic diagnostic information they need to provide good treatment.

Our comment:
Too bad they didn’t have Dr. Kalow. My son’s former pediatrician was Dr. Bruce Kalow, the doctor you wish you had. On his own initiative, during evenings at home after seeing young patients in his working class Somerville, Massachusetts community, Bruce developed a medical software program. His program improves communication with his patients and their families, many of whom primarily speak Spanish and Portugese, often with low literacy in English. At the end of the visit, he types briefly into his personal computer, which prints a sheet for the parent (and the doctor’s office) about the diagnosis, treatment, prescription, and follow-up instructions. When needed, the program readily provides the information in Spanish or Portugese.

Advice: Tell your foreign-born friends with little English literacy to look for a nearby doctor who routinely provides written summaries to patients in their primary language.

Read the source story by Dr. Erin Marcus in the July 24 New York Times.

Wednesday, August 1, 2007

They used a different brand: Defibrillators

In yesterday’s story, Dave described how he was brought back to life by a mix of competent providers at two Wisconsin hospitals, loving family members, automated electronic defibrillation (AED) and cardiopulmonary resuscitation (CPR).

The technology helped to save Dave’s life – and yet there is still great room for improvement.

Troy Betts, now a nurse manager in another hospital, was working in the Emergency Room of a Wisconsin hospital five years ago when paramedics brought in a man whose heart had been restarted by a defibrillator. Hospital nurses had to change the chest pads on the patient’s defibrillator because of a compatibility issue: the paramedics used a different brand of defibrillator. When the nurses changed the pads, the patient died.

Emergency workers later told Troy more stories of patients who died after their chest pads were switched, causing the patients to lose the electricity that had been regulating their erratic heartbeats. Heart attack patients frequently face two or three pad switches en route to the Emergency Room. Different businesses, schools, malls and other public places often use brands of AEDs that are incompatible with the ones used by paramedics and hospitals. And if police and Med Flight are involved, "it’s not unheard of to have four or five changes," Troy said.

But the pads’ likely role in their deaths generally remains unknown. "Most reports just say the heart stopped," Troy said.

Troy saw an error, and then took initiative to learn its root causes through talking with colleagues. The solution lies in standardization – a particularly difficult challenge when it requires either government policy or a formal decision by a professional association to coordinate action among competing vendors and healthcare provider organizations.

Advice for healthcare providers: When facing a problem this tragic and knotty, the best thing you can do may be to tell your story publicly, to rouse others to act.

Read Dave’s story, told here yesterday, and the source story by David Wahlberg in the Wisconsin State Journal of June 25.