DiversityNursing Blog

6. …but people still expect them to show up the second they ring the call bell.

7. Sometimes they’re working so hard, they can go entire shifts without eating, drinking water, or sitting.

instagram.com

Lunch break? What’s that?

8. Ditto going to the bathroom.

instagram.com

9. Some patients will incessantly hit on them.

Fox / Via nurseeyeroll.tumblr.com

10. Others will expose themselves for no clear medical reason.

Flickr: eflon / Creative Commons / Via Flickr: eflon

“Your arm is broken… so why is your dick out?”

Source: www.buzzfeed.com

By LIZ NEPORENT

Cathy Nichols and son Jason were front and center at the National Football League playoff game last Sunday to witness her beloved New England Patriots clinch a spot in this year’s Super Bowl.

The Fayette, Maine, resident, 59, had been diagnosed with terminal cancer just two days before the big game. She said it was the support of a close-knit community, and the generosity of the Patriots, that brought her to what she believed will be the last football game she will attend.

“My son and I are super fans and when I got the diagnosis, I told him we probably weren’t going to get to go to many more games,” Nichols told ABC News today. “Now, not only did I get to see them play, but I was at a playoff game; it was just unbelievable.”

Nichols’ worship of Tom Brady and all things Patriots is well known at Spruce Mountain High School in Jay, Maine, where she works as a special education teacher. So when she confided in several work friends about her illness, they immediately contacted a local sportscaster, who, in turn, reached out to the Patriots.

By Friday night, a team representative had called Nichols to offer her two tickets in the owner’s box to the playoff game.

Despite her rollercoaster of a week, Nichols said she was touched by the outpouring from friends and strangers alike.

“It isn't just the tickets, they’re doing fund-raisers and I’m getting calls from students and athletes I coached more than 25 years ago,” the former cheerleader coach said.

At Sunday’s game she not only had the best seats in the house, she was given field passes so she could watch the pregame warm-ups. Team owner Robert Kraft even called down to the field to make sure she was having a good time, before she returned to the box.

Nichols said she knows an invite to the Super Bowl was in the works but she put a stop to it. Doctors believe the disease may have already spread from her pancreases to her liver, she said, and she may only have six months to live. She doesn't feel strong enough to make the trip to Arizona for the February game.

But Nichols said she isn't bitter. Far from it.

“I am a very fortunate woman to have all this support and it makes me determined to be here as long as I can,” she said. “But I've lived a good life and I want to focus on quality of life over quantity.”

Source: http://abcnews.go.com

Moments after Jacob "Jake" Boddie woke from surgery to remove a tumor in his pelvis, his father, Kyle Boddie, said to his 2-year old son, "Hey, Jake, bust a move!" Although he was still groggy, the toddler smiled. One tiny shoulder, then the other, wiggled in time to a beat. 

Kyle and Jake's mother, Ashley McIntyre, say Jake started dancing long before he could walk. "And now that's all he does," Kyle said. "He loves it. You can't stop him."

During his yearlong treatment for a rare cancer, Jake danced with his nurses, child life specialists and doctors at the University of Chicago Medicine Comer Children's Hospital. He boogied in his hospital room, in the hallways, and even on the way to the operating room. His parents say dance helped Jake recover from his treatments and surgery. It helped them cope with their son's illness. 

"Even though Jake went through so much, he uplifted us," Ashley said. "We thought, if he can have fun through all of this, why can't we?"

Kyle and Ashley knew something was wrong when Jake wasn't acting like himself at a Fourth of July picnic in 2013. Agitated and restless, the toddler wasn't his "silly self" and refused to dance or play with the other children. A few days later he began limping. An ultrasound performed in the emergency room at Comer Children's Hospital showed a large mass resting in the lower part of his abdomen and reaching into his pelvis.

A biopsy revealed the mass to be a sarcoma, a fast-growing cancer. "The tumor was 4 inches in diameter, about the size of a small grapefruit," said pediatric oncologist Navin Pinto, MD, an expert on sarcoma treatment. In addition to his clinical work, Pinto leads a personalized medicine initiative at Comer Children's Hospital that is sequencing the genetic makeup of pediatric tumors from every patient to help guide treatment.

For Jake, several rounds of chemotherapy were needed to shrink the tumor to half its original size. It was then small enough to be removed, but Jake's surgery would be complicated. The tumor was wrapped around critical blood vessels as well as the right ureter, a tube that brings urine from the kidney to the bladder. 

On the morning of the surgery in January 2014, Ashley and Kyle danced with Jake to the song "Happy" as they headed toward the operating room doors; there they turned him over to the surgical team. "Jake knew something was going on," Ashley recalled, "but I think it made him feel better to see us laughing and dancing."

Pediatric urologist Mohan Gundeti, MD, and pediatric surgeon Grace Mak, MD, worked together in the surgical suite. First, Gundeti used an endoscopic approach, placing a stent in the ureter to mark its location and keep the fragile tube open. Mak then surgically removed as much of the tumor as possible, meticulously separating it from the vessels and ureter while avoiding nearby nerves. 

"Jacob recovered beautifully and bounced back quickly after the operation," Mak said, adding, "he was eating -- and doing his moves -- a few days later."

Completing Jake's treatment required both chemotherapy and radiation to eliminate any lingering cancer cells. In addition, the lower section of the right ureter had narrowed, leading to pressure on the right kidney, and needed attention before it became completely obstructed. 

Gundeti performed reconstructive surgery, moving the right kidney down a few centimeters and making a new tube for the ureter using a flap from the bladder. Again, Jake recovered quickly from an extensive surgery.

Today, the 3-year-old visits Comer Children's Hospital regularly for follow-up care with the nurses and doctors who cared for him. 

"He feels comfortable at the hospital; he's always laughing and having a good time," Kyle said. "Everyone knows him now. And everyone dances with him."

Source: www.uchicagokidshospital.org

By Carolyn Kylstra

1. They work 10- or 12-hour shifts, often without breaks.

Actually, make that 13 hours.

2. Those 10- or 12-hour shifts? They might just start at 6 am. OR AT 6 PM.

BuzzFeed

Rise and shine!

3. They have no idea what they’re about to encounter literally every time they go to work.

NBC / Via uproxx.com

4. Except they know for sure that they will be doing paperwork. Lots and lots of it.

Pixar / Via youtube.com

5. They’re usually taking care of about six (or more) patients at any given time…

CBS / Via cambio.com

Source: www.buzzfeed.com

U.S. health officials have hard numbers to back up their warnings that this season's flu shots are less than perfect: A new study finds the vaccine reduces your risk of needing medical care because of flu by only 23 percent.

Most years, flu vaccine effectiveness ranges from 10 percent to 60 percent, reported the U.S. Centers for Disease Control and Prevention.

Despite the reduced effectiveness of this season's flu shot, "vaccination is still important," said lead report author Brendan Flannery, an epidemiologist with the CDC.

"But there are ways of treating and preventing flu that are especially important this season," he added. 

These include early treatment with antiviral drugs and preventing the spread of flu by washing hands and covering coughs, he said. 

Twenty-three percent effectiveness means that there is some benefit -- a little less flu in the vaccinated group. Flu is usually more common among unvaccinated Americans, Flannery said, "but this year there is a lot of influenza both in people who are vaccinated and in people who are unvaccinated."

The findings are published in the Jan. 16 issue of the Morbidity and Mortality Weekly Report.

As of early January, the middle of flu season, flu was widespread in 46 states, and 26 children had died from complications of the infection, CDC figures show. 

The vaccine's reduced effectiveness highlights the need to treat serious flu quickly with antiviral drugs such as Tamiflu or Relenza, the CDC said. Ideally, treatment should start within 48 hours of symptoms appearing.

Spot shortages of these drugs have been reported, and the CDC said that people may have to contact several pharmacies to fill these prescriptions. However, it anticipates enough supply overall to meet the high demand. 

In flu seasons when the vaccine is well matched to the circulating H3N2 strains, effectiveness has been between 50 and 60 percent, the CDC said. This year, however, about 70 percent of the H3N2 virus seen has been different from the H3N2 strains in the vaccine, which explains its reduced effectiveness, Flannery said.

Flu viruses change constantly, and this new H3N2 virus did not appear until after the flu strains were chosen for inclusion in the current vaccine, he explained.

Vaccine effectiveness is also related to the health of those getting vaccinated. The vaccine works best in young, healthy people, and is less effective in those 65 and older, the report noted.

This year's shot is most effective -- 26 percent -- for children 6 months old through 17 years. Older people get less benefit -- just 12 percent for those 18 to 49 years and 14 percent for those 50 and older, the CDC said.

Although the vaccine is less reliable than in some years, the CDC still recommends that everyone 6 months and older get vaccinated. Vaccination can prevent some infections and reduce severe disease that can lead to hospitalization and death, the agency said. 

Also, the vaccine protects against three or four flu viruses, some of which may circulate later this season, Flannery said. 

Dr. Marc Siegel, a professor of medicine at NYU Langone Medical Center in New York City, agreed. As other flu strains included in the vaccine emerge later in the season, he predicted the vaccine's effectiveness will rise to about 40 percent. 

Flu activity so far this season has been similar to the 2012-2013 flu season, which was classified as a "moderately severe" flu, officials say. Siegel said that season "the vaccine's effectiveness was about 40 percent, so this is even worse." 

However, he agreed it's a good idea to get a flu shot. "Twenty-three percent is better than nothing, and there is no downside to getting the vaccine," Siegel said.

Source: www.nlm.nih.gov

By ANEMONA HARTOCOLLIS

Lindsey Hallen is in the bug spray aisle at REI, the outdoor equipment emporium in SoHo, looking for exactly the right mosquito repellent to take to West Africa’s Ebola zone, when her phone rings. Three ascending tones, the personal anthem of an emergency room nurse, captured in a ringtone called “Summit.”

“Hello?” she says, pulling the phone out of her jacket pocket. Then in an aside, “I think this is them.”

Ms. Hallen listens, pacing back and forth along the aisle, as her gaunt face takes on the same wide-eyed look of concentration it assumes as when she works in the emergency room at Lenox Hill Hospital in Manhattan. Total Focus. Matter of Life and Death.

Since the latest Ebola outbreak entered public consciousness, most accounts of United States health workers have focused on the ones returning; the missionaries who were airlifted out and brought back from the brink of death, or Craig Spencer, the young doctor cured of the virus at New York City’s premier public hospital, Bellevue Hospital Center in Manhattan, while much of the city held its breath.

Now Ms. Hallen, a 31-year-old nurse with two years’ experience working with critically ill patients in this country, is going the other way, heading to West Africa to fight an epidemic that has sickened 21,000 people and killed more than 8,000.

“Why?” her friends and colleagues invariably ask when they find out what she is doing. Why would a relatively young, untested nurse want to risk putting her life in jeopardy to help save people living thousands of miles away, people sick and dying of a brutal, bleeding, contagious fever?

The question annoys her. Her reasons are instinctive, from the gut. You feel driven to do this or you don’t. The thinking only comes later.

“Why not?” she replies. “Why not me?” So the phone call shakes her. The woman on the other end of the line is a recruiter for Partners in Health, the Boston organization that is sending her to West Africa. Instead of Sierra Leone, as had been planned, the group now wants her to go to Liberia, the woman says. Ebola cases there have fallen, but they need people who can rebuild the shattered medical system, teach about controlling infection. She won’t have direct contact with patients. Yes, she can still go to Sierra Leone if she wants to, and take care of patients there. The final decision is up to her.

So the choice is this: Be an instructor, safe, teaching other people how to wear a protective suit, or be the one wearing the suit. She is given a day to decide.

Ebola officially reached American shores on Sept. 30, when Thomas Eric Duncan, a Liberian visiting family in Dallas, tested positive for the virus. Preparing for a possible onslaught, Lenox Hill Hospital set up a room within the emergency department where Ebola patients would be isolated. The staff had to be trained in wearing protective gear, the stifling, fluid-proof layers that include bootees, gloves, gowns, goggles and face shields. The more Ms. Hallen learned, the more she wanted to know. She volunteered for advanced training. She started lingering on the website of the Centers for Disease Control and Prevention. “I was looking at the case numbers and I started to become a little obsessed with everything that was going on over there, and how it was impacting us here,” she said.

She spoke of her newfound interest to her older sister, Kimberly, a real estate photographer, who sensed that this was more than a casual attraction. “She texted me saying she had volunteered to train how to handle Ebola if it came to New York City,” Kimberly recalled. “In the back of my head, I was like, ‘Oh, God, I feel like this is going to expand into her wanting to do a little bit more.’ But I kind of put it away. Maybe not.”

“She’s always been like this ever since she was little,” Kimberly Hallen said. “She was always the one who was trying to find the next fun thing to do. She was bored so easily.”

Lindsey Hallen, a slight blonde with eyes that shift from green to blue depending on the weather and her mood, grew up in suburban Cheshire, Conn., and was a communications major in college, but not a very serious one. “I was very social and that was what I cared about,” she said. After graduation, she moved to Hawaii, without knowing anyone or even having visited. “I was amazed how well everything fell into place,” she said.

She worked at an animal clinic and went to South Africa on an unpaid internship in wildlife conservation. After two years, she moved to Boston, where her sister lives, and began working at Global Vision International, the organization that had sponsored her internship. Her job sent her to South Africa, Guatemala and Costa Rica, to make sure projects were running smoothly. As a memento, she wears three bracelets on her right arm made of twisted copper and brass that she bought at street markets in South Africa. She never took them off, but she had to leave them with her sister before departing for Africa.

After three years, she wanted to grow. She thought about veterinary school, but she also wanted to travel. “Nursing came to mind as a perfect middle ground,” she said. Now, after two years in the E.R., the dread that she has done something wrong no longer wakes her at night. She can rattle off the medical script for an alcoholic with the shakes, a child with the flu or an elderly woman with a broken hip like someone reciting a Social Security number.

There has to be more to life than the three-block dash from her Upper East Side brownstone studio to the 8-a.m.-to-8-p.m. shift at Lenox Hill, and back.

The Ebola patient in Dallas died on Oct. 8, having set off a rapid chain of events. Two nurses who treated him fell ill, shaking confidence in the United States health care system. In mid-October, several New York hospitals volunteered to be Ebola treatment centers, including a sister hospital to Lenox Hill. On Oct. 23, Dr. Spencer, recently returned from Guinea, was rushed to Bellevue and tested positive. The next day, Kaci Hickox, a nurse returning from Sierra Leone through Newark Liberty International Airport, was forced into quarantine because of public officials’ fears.

Rather than being frightened, Ms. Hallen was swept away. Ebola was her 9/11, the disaster that nourished her sense of purpose.

Scrolling through the C.D.C. website, she came across a link to an application form for medical volunteers willing to go to West Africa, kind of like a universal college application online.

She recalls sending it in a few days after Ms. Hickox returned. Her first response, from Partners in Health, arrived on Halloween night. She sent back an email as she dressed for a Halloween party. She was not a sexy witch, or even a nurse. She wore a $12 zombie suit with a zipper splitting her face.

Still, she didn’t really think it would happen. And she assumed that even if she were selected, she would not be paid, and she could not afford that. But Partners in Health agreed to pay for her travel, expenses and medical insurance, as well as provide a stipend that would cover most of her lost salary for nine weeks; six weeks in West Africa and three weeks upon her return, during the disease’s incubation period. As a single person, she didn’t have to worry about disrupting anyone else’s life.

The agency also agreed to pay for her evacuation if she contracted Ebola — a further reminder of the dangers.

Her mother, Laura, cried when she heard the news. Her father, Dan, “had a million questions” but was proud of her.

“I think that she’s got the right mentality to perform in this type of environment,” Mr. Hallen said. “I guess what I would liken it to is firefighters that rush into a burning building when everyone else is running out. All I can say to that is, thank God for them. Where would we be without them?”

That mentality is not widely shared, the numbers suggest.

Since November, about 1,300 people have applied to travel to West Africa through Partners in Health, and about 360 have been hired, Sheila Davis, chief of the agency’s Ebola response, said. She said she was still looking for people with the right “humility,” but the number of applicants has declined as Ebola has moved off the front pages.

North Shore-LIJ Health System, the hospital network that includes Lenox Hill, has 54,000 employees. Ms. Hallen is only the second one to go to West Africa to treat Ebola, Joseph Moscola, the system’s chief of human resources, said. An informal survey of other New York City hospitals found few if any volunteers at most of them.

At some hospitals an internal debate rages over whether highly trained specialists should be volunteering to do menial work in African field hospitals or can make a better contribution at home, perhaps by doing Ebola research.

“Major academic institutions, you would think, would be those who would be pushing it,” Ms. Davis said. “But it’s the opposite. It’s definitely been Middle America, and California, but not the numbers you would think in Boston and New York.”

In preparation for Ms. Hallen’s trip, Partners in Health sent her a packing list. Mostly it is similar to a list for summer sleep-away camp: shampoo, toothbrush, underwear. But not entirely. She will need a headlamp, in case the electricity goes down, and some fancier clothes to wear for Embassy events. Also, styptic pencils to stanch cuts, and tampons, for nosebleeds, ominous inclusions in an environment where bodily fluids may be deadly. Ms. Hallen has scratched out the word “condoms.” She has enough contagion to worry about, she said. She trades email with other volunteers. Bring washable shoes, they say. Dried fruit, nuts and granola bars, to break the monotony of rice and beans.

She picks up her mosquito net at REI and jokes that she might use it to keep away the cockroaches in her apartment. Last night she slept with a hat on, haunted by a woman who had arrived at the emergency room with ear pain. The diagnosis: a cockroach stuck in her ear canal.

At the checkout counter, the brooding, longhaired salesman examines her basket and asks where she is going. “Sierra Leone or Liberia,” she replies.

“You should read this book,” he says, and on a scrap of paper writes the name Peter Piot, author of a memoir about the discovery of Ebola and AIDS.

The next night, she writes an email to the recruiter from Partners in Health. Deletes it. Writes it again. Presses “send” at 11:42 p.m.

At 10 a.m. Saturday, she was scheduled to fly to Sierra Leone, to care for people who are sick and dying of Ebola.

Source: www.nytimes.com

Martin Pistorius fell into a mysterious coma when he was a vibrant 12-year-old boy in the 1980s.

He found himself locked inside his own body – unable to speak, make eye contact or even move his own limbs.

Martin’s doctors told his parents, Rodney and Joan Pistorius, that the boy had cryptococci meningitis. They said Martin should be taken home to die in peace.

But Martin would live 12 years in that vegetative state.

Joan said, “Martin just kept going, just kept going.”

According to NPR, Martin’s father would wake up every day at 5 a.m., dress the boy, put him in the car and drive him to a special care center.

“Eight hours later, I’d pick him up, bathe him, feed him, put him in bed, set my alarm for two hours so that I’d wake up to turn him so that he didn’t get bedsores,” Rodney recalled.

And during those 12 years, according to the Pistorius family, there was never any indication that Martin’s condition was improving.

One day, Joan, in a state of hopelessness, told her son, “I hope you die.”

She never imagined that Martin would have understood those dreadful words.

Have you worked with a patient in a similar situation and thought perhaps he/she could hear and understand you? If so, what made you aware of it?

But by the time he was 14 or 15 years old, Martin began to awaken.

“Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up,” Martin recalls. “I was aware of everything, just like any normal person. Everyone was so used to me not being there that they didn’t notice when I began to be present again. The stark reality hit me that I was going to spend the rest of my life like that – totally alone.”

Martin had even heard his mother’s cruel words.

“You don’t really think about anything,” he said. “You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish.”

Martin added, “As time passed, I gradually learned to understand my mother’s desperation. Every time she looked at me, she could see only a cruel parody of the once-healthy child she had loved so much.”

At the care center every day, Martin’s caregivers played “Barney” reruns. They too believed he was a vegetable.

He said, “I cannot even express to you how much I hated Barney.”

Now Martin, 39, is in full control of his body. He’s married and lives a normal life in Harlow, England.

In his book “Ghost Boy,” he writes, “My mind was trapped inside a useless body, my arms and legs weren’t mine to control and my voice was mute. I couldn’t make a sign or sounds to let anyone know I’d become aware again. I was invisible – the ghost boy.”

Source: www.wnd.com

By Cynthia Howard RN, CNC, Phd

Finding the right nursing job includes finding a manager that will help you grow, develop, and support your career goals.

There is a saying that people leave their managers and not their jobs and to have success in your career may mean you want to circulate your resume in order to find the best fit for you. This means you have to know what you want and need in the area of support.

Here are 10 warning signs you may be working with the wrong manager:

1. You never hear from your manager prior to your performance reviews. Over 75% of performance problems can be improved with proper feedback and less than 33% of the time, feedback is provided.
    
2. You have no idea what they want.  This can be worse than not having feedback at all. When a manager says, “I do not like how you did that,” you really have no way of knowing what they really mean. Make sure to ask for clarification. Review your job description and ask for your manager to specify what parts of your job responsibilities are most important to them. It could be they are focused on patient safety and you have an interest in health literacy. Knowing what they want gives you the advantage of focusing your efforts for the greatest gain.
    
3. It is their way or the highway.  This is a problem for many nurses. Job satisfaction comes with autonomy and the opportunity to solve your own problems as they show up on the job. When a manager consistently tells you what and how to do something, employees quickly turn off their own creativity; more than likely, with an increase in mistakes.
   
   A nurse who is practicing for 7 years shared a story about his experience on a new unit. His Clinical Specialist was a micro-manager. She told him to give this medication immediately because of incoming admissions. She had poured the med. This went against his better judgment but because he knew she would have a fit, he gave it, to the wrong patient. She was extremely apologetic however the “error” was on him. Do not compromise your judgment for the sake of status quo.
    
4. Your manager wants you to figure it out.  The opposite of micro-managing is to not manage at all and letting everyone figure it out for themselves. This happens quite a bit leaving the power position to go to the most domineering individuals on the unit. Everyone needs to know the manager is in charge and when needed will make those tough decisions.
    
5. You could not recognize them if your life depended on it.  If your manager hides behind email or a closed door, having a relationship with your manager will be impossible. Communication and trust is the foundation of a great working relationship.  
   
   Suggestion for managers: Time is an important commodity and getting around to all your staff can be time consuming. Why not use technology and set up a short video. Most iPhones take excellent video. Take 2-3 minutes every week and share what is going on. You may also want to share something personal about yourself; if you just started juicing, kickboxing, celebrated an anniversary or a milestone with your children. Interview them, show images along your morning run, and share something of yourself in order to make the connection with your staff.
   
   Suggestion for staff: Make a short video on your unit of a new initiative, gratitude board in the break room, more efficient way to give report, a snippet of rounds, and just a friendly hello from everyone on the unit. You may even want to say thanks and express appreciation; managers are people too!
    
6. The way out the door is faster than up. If you have a manager that makes any attempt for you to advance your skills difficult, it will be hard to boost your resume. Managers can feel threatened by qualified staff members who want to move up the ladder and may indirectly thwart your efforts to move forward. This is really short sighted on the manager’s part because any manager that turns our qualified leaders actually looks really good to their higher ups given the ongoing need for good talent in any organization.
    
7. Lack of training.  Being able to do a job well requires the right training. Often it takes the manager to assess the need for training based on performance and outcomes. This relates to the lack of feedback. While every employee really should do their own assessment of what they need to do well and then make the request of their manager, the manager should also be on the lookout for staff that need training and set up opportunities to make this happen.
    
8. When the manager has obvious “favorites.”  Everyone has preferences in personality style, but when the manager consistently selects one particular individual for all the initiatives, opportunities for advancement, or other assignments that provide variety, the manager is sending a message to others they do not care about your skills or your future.
    
9. When your manager routinely says, “I’ll think about it.”  Obviously considering all sides of the problem/ situation is important however some managers hide behind this and never make a decision about what is the ideal way to go.  Quickly, this can be frustrating if you are looking for a course of action to solve a problem.
    
10. When your manager over reacts or criticizes you in front of others.  This is a toxic behavior and is an indication you want to find a new place to work. Quickly this will diminish your self-esteem, leading to resentment and stagnation.
    
    Knowing what you want in the way of workplace is key and will help you avoid a poor manager. What type of opportunities are you looking for in the workplace? What are your career goals? Evaluate the workplace, ask questions, find out the management style, review a performance appraisal, ask about turnover, and see if you can build a relationship with your new manager.  

Enjoy the opportunity to find a place that truly supports and honors you! 

Source: www.nursetogether.com

By ELIZABETH A. HARRIS

The police were banging on the doors and the windows of her home while she cowered in the closet, a 17-year-old girl recounted. She remembered clutching her phone, crying, calling her mother.

“I was scared,” she wrote of the experience.

It may sound like a drug raid, or the climax of a movie. But in fact, the police, along with representatives of Connecticut’s Department of Children and Families, had come to take the girl for chemotherapy.

Do you think she has the right to refuse chemotherapy?

The girl, identified in court papers as Cassandra C., learned that she had Hodgkin’s lymphoma in September. Ever since, she and her mother have been entangled in a legal battle with the state of Connecticut over whether Cassandra, who is still a minor, can refuse the chemotherapy that doctors say is likely to save her life. Without it, the girl’s doctors say, she will die.

“It’s poison,” Cassandra’s mother, Jackie Fortin, said of chemotherapy in an interview on Friday. “Does it kill the cancer? I guess they say it does kill the cancer. But it also kills everything else in your body.”

Ms. Fortin continued, “It’s her body, and she should not be forced to do anything with her body.”

Doctors said in court documents that they had explained to Cassandra that while chemotherapy had side effects, serious risks were minimal.

On Thursday, Connecticut’s Supreme Court ruled that Cassandra had had the chance to show at trial that she was a “mature minor,” competent to make her own medical decisions, but had failed to do so. And so the chemotherapy treatments, which had already begun, will continue.

Cassandra was a healthy, artistic 16-year-old before the illness was diagnosed, her mother said. She liked to paint and draw, mostly abstract pieces, but also cartoons and silly things. She had a paper route and a retail job. She had a tattoo on her back of the character Simba from “The Lion King,” the namesake of her cherished, yellow tabby cat. She had been home-schooled since the 10th grade.

Then she found a lump on the right side of her neck. She went to her pediatrician, and after rounds of tests that dragged on for months, doctors at Connecticut Children’s Medical Center in Hartford told her she had Hodgkin’s lymphoma. According to court documents, her doctors said that with chemotherapy, and sometimes radiation, patients had an 85 percent chance of being disease-free after five years.

Ms. Fortin, of Windsor Locks, near Hartford, said that she and her daughter had wanted a second opinion and a fresh battery of tests. They had begun looking for a new team of doctors to verify the diagnosis, and hoped to find alternatives to chemotherapy.

But the state said in court documents that Ms. Fortin had not brought her daughter to some medical appointments and was “not attending to Cassandra’s medical needs in a timely basis.”

The Department of Children and Families took temporary custody of the girl in late October 2014. Two weeks later, she was allowed to go home, so long as she underwent chemotherapy. But after two days of treatment, she ran away from home.

“Although I didn’t have any intention of proceeding with the chemotherapy once I returned home, I endured two days of it,” Cassandra wrote in an essay published in The Hartford Courant this week. “Two days was enough; mentally and emotionally, I could not go through with chemotherapy.”

About a week after running away, Cassandra came home. In her essay, she wrote that she had returned because she was afraid her disappearance might land her mother in jail. In December, she was hospitalized.

“I was strapped to a bed by my wrists and ankles and sedated,” she wrote in the essay, which was accompanied by a photo of her in the hospital. “I woke up in the recovery room with a port surgically placed in my chest. I was outraged and felt completely violated.”

“How long is a person actually supposed to live, and why?” she wrote. “I care about the quality of my life, not just the quantity.”

In a statement this week, the Department of Children and Families said it preferred to work with families, not compel them, but had no choice in some cases.

“When experts — such as the several physicians involved in this case — tell us with certainty that a child will die as a result of leaving a decision up to a parent,” the statement said, “then the Department has a responsibility to take action.”

Cassandra’s legal battle is not unprecedented, but it is unusual, said Dr. Paul S. Appelbaum, director of the Division of Law, Ethics, and Psychiatry at Columbia University College of Physicians & Surgeons.

“Nobody likes to overrule a parent and a child, particularly when they are in agreement,” he said.

Courts tend to be cautious about ordering treatment over a patient’s objections, Dr. Appelbaum said, and whether they do so often involves several factors, including the seriousness of the condition, the child’s maturity, and concern about whether the child’s opinions are being influenced by a parent or other third party. Several of those variables appear to have figured in this case, he said.

But Ms. Fortin’s lawyer, James P. Sexton, said that Cassandra was only months shy of her 18th birthday, when the decision about her care would be hers to make. By then, the chemotherapy will most likely be over.

Today she is confined to the hospital. Her communications are limited, as are her visits with her mother. Mr. Sexton said the family would continue to fight in court.

Source: www.nytimes.com

By Elizabeth Cohen

But, in the midst of this despair, a miracle arrived at Project Medishare. CNN Senior Photographer Ferre Dollar caught these images seconds after she arrived. Look closely at the center of the photo.

This 4-month-old baby had spent four days alone in the rubble and was unconscious and extremely dehydrated. No one knew if she would live or die. 

But look at her now!

CNN medical producer John Bonifield and I had the pure joy of seeing this wonderful young lady again last week. Her name is Jenny, and she's 5 years old and a pre-kindergartner in Miami. She can write her name and loves to color and dress up as a princess and is adorable and spunky and smart and funny. 

Here are all the miracles that it took to save her life: 

1. That someone happened to find Jenny in the rubble four days after the quake. 

2. That at a time when vehicles were in short supply, Jenny's rescuers flagged down a car to rush her to the hospital. 

3. That the Medishare team of doctors and nurses, led by Dr. Karen Schneider, an emergency medicine physician at Johns Hopkins, managed to get fluids into her. Jenny was so dehydrated her veins had collapsed and Schneider had to put a needle through her shinbone and directly into her bone marrow to deliver fluids. They didn't have to sedate her -- Jenny was so unconscious she didn't even cry.

4. That Project Medishare found a flight headed immediately to Miami, because she needed surgery the tent hospital couldn't provide. Hospital workers flagged down a UN truck and promised the driver they'd name the baby after her if she got the airport on time. 

5. That the baby, then named Patricia after the truck driver, survived the flight to Miami and the emergency surgery. 

When the baby arrived in Miami, it was presumed her parents were dead. She'd been found in the rubble next to the body of a woman, thought to be her mother. 

But that woman turned out to be her baby sitter. Shortly after the baby arrived in Miami, a couple came forward saying they were her parents. Many people doubted them, thinking they just wanted to get to Miami, but DNA testing showed they were telling the truth and the baby's name was actually Jenny. 

Now Jenny and her parents, Nadine Devilme and Junior Alexis, and her 17-month-old little sister, Naima, live in an apartment in North Miami. Her parents have explained to Jenny that the bumpy scars on her left arm are from when she was crushed in the rubble of the Haiti earthquake. They've told her she's a miracle, that Jesus saved her. 

Jenny nods her head and says she understands. But really she's a little embarrassed by all the attention and just wants to go put on her Cinderella dress and go outside and ride her bike and then draw pictures of big red flowers under a sun and sign her name: 

Jenny Alexis.

Source: www.cnn.com