DiversityNursing Blog

By Brittany Maynard

Editor's note: Brittany Maynard is a volunteer advocate for the nation's leading end-of-life choice organization, Compassion and Choices. She lives in Portland, Oregon, with her husband, Dan Diaz, and mother, Debbie Ziegler. Watch Brittany and her family tell her story at www.thebrittanyfund.org. The opinions expressed in this commentary are solely those of the author.

(CNN) -- On New Year's Day, after months of suffering from debilitating headaches, I learned that I had brain cancer.

I was 29 years old. I'd been married for just over a year. My husband and I were trying for a family.

Our lives devolved into hospital stays, doctor consultations and medical research. Nine days after my initial diagnoses, I had a partial craniotomy and a partial resection of my temporal lobe. Both surgeries were an effort to stop the growth of my tumor.

In April, I learned that not only had my tumor come back, but it was more aggressive. Doctors gave me a prognosis of six months to live.

Because my tumor is so large, doctors prescribed full brain radiation. I read about the side effects: The hair on my scalp would have been singed off. My scalp would be left covered with first-degree burns. My quality of life, as I knew it, would be gone.

After months of research, my family and I reached a heartbreaking conclusion: There is no treatment that would save my life, and the recommended treatments would have destroyed the time I had left.

I considered passing away in hospice care at my San Francisco Bay-area home. But even with palliative medication, I could develop potentially morphine-resistant pain and suffer personality changes and verbal, cognitive and motor loss of virtually any kind.

Because the rest of my body is young and healthy, I am likely to physically hang on for a long time even though cancer is eating my mind. I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that.

I did not want this nightmare scenario for my family, so I started researching death with dignity. It is an end-of-life option for mentally competent, terminally ill patients with a prognosis of six months or less to live. It would enable me to use the medical practice of aid in dying: I could request and receive a prescription from a physician for medication that I could self-ingest to end my dying process if it becomes unbearable.

I quickly decided that death with dignity was the best option for me and my family.

We had to uproot from California to Oregon, because Oregon is one of only five states where death with dignity is authorized.

I met the criteria for death with dignity in Oregon, but establishing residency in the state to make use of the law required a monumental number of changes. I had to find new physicians, establish residency in Portland, search for a new home, obtain a new driver's license, change my voter registration and enlist people to take care of our animals, and my husband, Dan, had to take a leave of absence from his job. The vast majority of families do not have the flexibility, resources and time to make all these changes.

I've had the medication for weeks. I am not suicidal. If I were, I would have consumed that medication long ago. I do not want to die. But I am dying. And I want to die on my own terms.

I would not tell anyone else that he or she should choose death with dignity. My question is: Who has the right to tell me that I don't deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?

Now that I've had the prescription filled and it's in my possession, I have experienced a tremendous sense of relief. And if I decide to change my mind about taking the medication, I will not take it.

Having this choice at the end of my life has become incredibly important. It has given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty and pain.

Now, I'm able to move forward in my remaining days or weeks I have on this beautiful Earth, to seek joy and love and to spend time traveling to outdoor wonders of nature with those I love. And I know that I have a safety net.

I hope for the sake of my fellow American citizens that I'll never meet that this option is available to you. If you ever find yourself walking a mile in my shoes, I hope that you would at least be given the same choice and that no one tries to take it from you.

When my suffering becomes too great, I can say to all those I love, "I love you; come be by my side, and come say goodbye as I pass into whatever's next." I will die upstairs in my bedroom with my husband, mother, stepfather and best friend by my side and pass peacefully. I can't imagine trying to rob anyone else of that choice.

What are your thoughts about "death with dignity"?

Source: CNN

By Nicole Scobie

Here's a light-hearted look at cancer treatment from the point of view of my son Elliot, who was only 4 1/2 when he was diagnosed. I know many of the adults I am in touch with who have cancer or who are helping a person with cancer through this journey, will relate!

Advice to adults with cancer from a 5-year-old:

1. It is perfectly acceptable to have a complete tantrum and throw your shoes around just before leaving for the hospital.

2. You always deserve a present after chemo.

3. If you feel like showing more respect and politeness to the hospital clown than your oncologist, that's OK.

4. If you manage to grab the syringe of medicine from the nurse, it's their loss and you are then allowed to squirt its entire content around the room.

5. You are allowed to complain loudly about any smells like perfume, but you are also allowed to fart freely whenever and wherever you want.

6. Anyone who says "this one tastes like syrup" better be not be lying or they can expect to catch some spit.

7. You are allowed to worry about life and death, but only to the same extent that you worry about whether Santa Claus will be able enter your home if you don't have a chimney.

8. Speaking of worry, you are not allowed to worry about anything that is not going to happen today or tomorrow.

9. Any bad thing that happened in the past should be quickly erased from your mind using ice cream.

10. It's OK to throw up directly on your caregiver instead of into the bucket they are holding. It will create warm and funny memories for them once this is all over.

11. Good friends may stare when they first see you without any hair, but they are quickly more interested in all your new toys. So make sure you have lots of new toys around all the time.

12. It is the right thing to do to jump off the examining table if the doctor's hands are too cold.

13. A popsicle for breakfast is a good idea and goes well with bacon.

14. If someone rubs your bald head and says you're cute, you should stare at them in complete boredom until they stop.

15. Always believe that scars are badges of courage and make you look like a pirate or a superhero.

16. Jumping on the bed is a perfectly acceptable form of exercise.

17. Someone should always be available to carry you if you don't feel like walking anymore and they will be grateful if you look at them lovingly and say, "You're walking too slowly."

18. It's a good idea to frequently press the little button next to the bed that makes the nurse come running, because she might be lonely and bored and enjoys picking your crayon up from the floor.

19. The only part of hospital food you should eat is the dessert. The rest is not really food, anyway.

20. Make having fun your priority all the time, no matter where you are or what's going to happen next.

Source: http://www.huffingtonpost.com

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By PATTY WIGHT

Some of us are lucky enough to stumble into a job that we love. That was the case for Gabrielle Nuki. The 16-year-old had never heard of standardized patients until her advisor at school told her she should check it out.

"I was kind of shocked, and I was kind of like, 'Oh, is there actually something like this in the world?' "

Since Nuki wants to be a doctor, the chance to earn $15 to $20 an hour training medical students as a pretend patient was kind of a dream come true. Every six weeks or so, Nuki comes to Maine Medical Center in her home town of Portland, Maine, slips on a johnny, sits in an exam room and takes on a new persona.

Third-year medical student Allie Tetreault knows Nuki by her fictional patient name, Emma. A lot of teens avoid the doctor, so it's important for Tetreault to learn how to make them feel comfortable.

"What kinds of things do you like to do outside of school?" Tetreault asks.

"Um, I play soccer, so preseason is coming up soon."

Nuki preps weeks ahead of time for her patient roles. She memorizes a case history of family details, lifestyle habits and the tone she should present. "I've had one case where I was concerned about being pregnant. That was kind of like the most harsh one, I guess."

As Emma, Nuki's playing just a shy, healthy teen.

"How did school finish up for you this year?" Tetreault asks.

"Um, it was good. Yeah, school's been good. Um, yeah."

Emma's an easy role, Nuki says, but she ups the shyness factor because it poses a classic challenge to the medical student: how to get a teen to open up?

"Each case kind of has what's on paper, but then you can come in and kind of add another level," Nuki says. "Depending on how complex it is, you can add your own twist to it."

After asking Emma about her personal history, Tetreault moves on to the physical exam and listens as Emma takes deep breaths.

Tetreault gives Emma a clean bill of health and the practice appointment is over. But the most important part of Gabrielle Nuki's job is about to begin.

The 16-year old now has to evaluate the adult professional. She's smooth and tactful after lots of training on how to deliver feedback. Nuki tells Tetreault she did a good job making her feel comfortable.

"I also liked how you mentioned confidentiality, because for my age group, that's important to touch on," Nuki says. "And I think that maybe you could have had a couple more times where you asked me if I had any questions, but other than that I think you did a really great job."

It's communication skills versus acting skills that really qualify someone to be a standardized patient, says Dr. Pat Patterson, the director of pediatric training at Maine Medical Center.

"A lot of patients want to please their physician," Patterson says. "It's not easy for a patient to say 'That didn't feel right', or 'The way you asked that made me feel bad.' "

Gabrielle Nuki says working with medical students and being forthright about their performance has given her more confidence. In the future, she hopes to take on more complex roles — maybe someone with depression.

But she knows no matter what kind of patient she portrays, this job will prepare her well for when she reverses roles and one day becomes a doctor.

Source: http://www.npr.org

By DENISE LAVOIE Associated Press

If something good could come out of the Boston Marathon bombing, James Costello and Krista D'Agostino seem to have found it.

Sixteen months after the attack killed three people and injured more than 260, including Costello, he married D'Agostino, the nurse who helped him recover. The couple exchanged vows Saturday at the Hyatt Regency Boston in front of about 160 guests.

A photograph of Costello with his clothes ripped to shreds and parts of his body burned became one of the most recognized images of the 2013 attack. He met D'Agostino, a nurse at Spaulding Rehabilitation Hospital, while he was recovering from multiple surgeries for shrapnel injuries and serious burns that required pig skin grafts on his right arm and right leg.

After the couple became engaged, Costello said he believed he was involved in the tragedy in order to meet D'Agostino, whom he described as his best friend and the love of his life.

"One thing that she hates that I always say is I'm actually glad I got blown up," Costello said on the "Today" show in December. "I wish everyone else didn't have to, but I don't think I would have ever met her if I didn't."

Wedding planner Rachael Gross said she and the other vendors involved in the wedding donated their services.

"They are the most gracious, generous, kind, ... loving couple," Gross said. "They believe that they were meant to meet."

The wedding ceremony was held outdoors on the hotel's third-floor terrace, with blue and white hydrangeas all around. The reception was held in the hotel's grand ballroom.

"It was more like a classic Nantucket style, but without a literal nautical theme," Gross said.

Costello, of Malden, was gathered with friends near the marathon finish line, watching for another friend who was running when two bombs exploded within seconds of each another. Three of Costello's friends lost a leg, while other friends suffered burns and shrapnel injuries.

During his two-week stay at Massachusetts General Hospital, Costello was among patients who met President Barack Obama. He was later transferred to Spaulding.

Costello and D'Agostino, both 31, are honeymooning in Hawaii.

Source: http://abcnews.go.com

By Jason Lee

Surgeons in Beijing, China, have successfully implanted an artificial, 3D-printed vertebra replacement in a young boy with bone cancer. They say it is the first time such a procedure has ever been done.

During a five-hour operation, the doctors first removed the tumor located in the second vertebra of 12-year-old Minghao's neck and replaced it with the 3D-printed implant between the first and third vertebrae, CCTV.com reported earlier this month.

"This is the first use of a 3D-printed vertebra as an implant for orthopedic spine surgery in the world," said Dr. Liu Zhongjun, the director of orthopedics at No. 3 Hospital, Peking University, who performed the surgery.

The boy was playing football when he headed the ball and injured his neck, and it was later confirmed that he had a tumor, Minghao's mother said.

Prior to the surgery, the patient had been lying in the orthopedics ward for more than two months, and he could occasionally stand up, but only for a few minutes.

Normally, a diseased axis would be replaced by a standardized, hollow titanium tube, Liu told Reuters.

"Using existing technology, the patient's head needs to be framed with pins after surgery," as his head cannot touch the bed when he is resting for at least three months, he explained. "But with 3D printing technology, we can simulate the shape of the vertebra, which is much stronger and more convenient than traditional methods."

Five days after the surgery, Minghao still could not speak and had to use a writing board to communicate. However, doctors said at the time that he was in a good physical condition and they expected him to make a strong recovery.

Source: http://www.cbsnews.com

By: Healthday

Odds are small, but family, doctors should keep possibility in mind, researchers say.

Babies born prematurely appear to have a slightly increased risk of potentially fatal blood clots that they will carry into adulthood, Swedish researchers report.

Doctors have previously suspected that babies born earlier than 37 weeks' gestation have a raised risk of deep vein thrombosis and pulmonary embolism, two serious conditions caused by blood clotting in the veins, the researchers noted in background information.

This new study confirms that link, and takes it even further. Premature birth appears to be linked to an increased chance of blood clots in the veins in childhood and early adulthood, according to findings published online July 28 in the journal Pediatrics.

The researchers also reported that a baby's chances of blood clot-related illnesses are directly related to the degree of prematurity. "The more premature, the higher the risk," said Dr. Edward McCabe, chief medical officer of the March of Dimes. A full-term pregnancy lasts from 39 to 40 weeks.

While parents and doctors should keep this risk in mind, they should also be aware that the risk is not huge, said Dr. Kristi Watterberg, chair of the American Academy of Pediatrics' committee on the fetus and newborn. Watterberg and McCabe were not involved with the study.

The association between premature birth and clot risk seen in the study does not prove a cause-and-effect relationship.

The study involved 3.5 million babies born in Sweden between 1973 and 2008, including almost 207,000 born preterm. Out of all the births, only about 7,500 children -- 0.2 percent -- suffered either deep vein thrombosis or pulmonary embolism later in life.

"I think it's important scientifically to know, but it's such a low incidence phenomenon that there are a lot of things to think about before that," said Watterberg, a professor of pediatrics and neonatology at the University of New Mexico School of Medicine.

Deep vein thrombosis involves blood clots that form in a vein deep in the body. If these clots aren't treated and dissolved, they can break off and travel through the bloodstream to the lungs, causing a blockage called a pulmonary embolism. Such a blockage can be deadly.

For the study, Dr. Bengt Zoller, of the Center for Primary Health Care Research at Lund University in Malmo, Sweden, and colleagues used records from the Swedish Birth Registry to track the babies' health. The researchers found that premature babies had an increased risk of blood clots in their veins in infancy, but also from ages 1 to 5 and from 18 to 38.

Very preterm births -- before 34 weeks of gestation -- also had a risk of blood clot-related illness in adolescence, from age 13 to 17.

Boys had an increased risk of blood clots in infancy, while girls were more likely to carry the risk into adolescence and adulthood, the study authors reported.

No one knows why this increased risk exists, but it could be due to genetic factors that caused the mother to deliver prematurely in the first place, Watterberg and McCabe said.

Diseases such as diabetes, thyroid problems and obesity are genetic in nature and can cause preterm delivery, McCabe said.

Also, some mothers who suffer a genetic deficiency in a key protein that controls blood clotting may be predisposed to give birth prematurely, Watterberg said.

"It may be that maternal genetics are a setup for preterm delivery, and those problems are passed along to the infant," she said.

The mother's wellness and lifestyle also play a role in a baby's lifelong health, and could influence their risk of blood clots, McCabe said.

Finally, this link might arise because the babies are born prematurely, and are robbed of maternal hormones and nutrition in the womb that could have decreased their future risk of blood clots.

"We are not as good at getting nutrition into those babies as the mother and placenta are, and we do know that hormones have something to do with the predisposition to clotting," Watterberg said. "It makes sense to me you'd have changes in those long-term outcomes as well."

In any case, it is something for the family and doctor of a person born prematurely to keep in mind, McCabe said.

"If a patient has a history of preterm birth, and the more preterm, the more attention it needs to have," he said. "It helps us be better prepared. If a patient comes in with unusual findings, this provides us some clue."

Source: http://healthfinder.gov

By Gloria Kindzeka, RN

Editor's note: The writer is the "2013 Amazing Nurse” of The Johnson & Johnson Campaign for Nursing’s Future Amazing Nurse program (www.AmazingNurses.com). She was honored on the Nursing Notes by Johnson & Johnson Facebook page (www.Facebook.com/JnJNursingNotes) and shared her inspiring story with Nurse.com. 

I met the little girl who would make a lasting impression on my life the night she was discharged from the hospital after a long stay in the NICU. 

Kate was crying when I met her. She had been diagnosed with Pfeiffer syndrome and was experiencing tremendous pain because of orbital pressure. I could see the orbits bulging and knew that continuous crying could exacerbate the situation and result in a serious medical emergency. I prayed to God to give me a healing touch to help her avoid another long hospital stay so she could enjoy being at home with her family. 

I’m originally from Cameroon, West Africa, and to help calm Kate that night I sang a lullaby in my dialect until she fell asleep. From that day forward this became our regular bedtime routine.

The first two years were very difficult. Kate was in and out of the hospital quite often for therapies, medical emergencies and other medical procedures. Her medical team was not sure she would survive, or whether she would be able to eat or walk if she did survive.

It was an indescribable experience as a mother and a nurse to watch Kate’s mother listen and digest all the information from the physicians, most of which was not positive. I offered her my unwavering support, encouragement and positive thoughts during these dark periods. Although I showed a brave face while working with Kate and her family, I cried in the car on my way home every day for the first two weeks. 

Together, Kate’s mom and I spent many hours researching Kate’s rare genetic condition. We became better educated on treatments and discovered a number of support groups. Kate’s mother was determined that her daughter would beat the odds, and I promised myself that I would do everything I could to take care of Kate and help her reach her fullest potential. As a nurse, I felt this was my purpose and why I was sent to work with Kate and her family. 

Despite Kate’s numerous complex medical needs, she is a hero who bounces back from every surgery like a fighting champion. I have seen her come out from a major cranial vault surgery, cut from ear to ear, and be discharged after only three days. With her eyes shut and her head swollen to twice its regular size, she attended all scheduled therapies, ate and walked, even when she was supposed to rest and remain relatively inactive.

Kate, now age 4, continues to meet every challenge head-on. She has refused to use any adaptive equipment, even though her elbows are fused. She attends school daily, participates in community activities and sports, and travels everywhere with her family. Kate has learned to eat by mouth and drink with a straw, which is uncommon for a child with a tracheostomy tube. She does all these things because she has a strong spirit and is determined to live happily and fully. 

Through Kate, I have learned to find beauty in challenging circumstances. I’ve learned that every child has special gifts and possesses the ability to overcome tough conditions. I am more appreciative of the things I took for granted in life.

On a personal level, it’s satisfying to know that I contributed to improving the health and well-being of my patient. The best way to explain it is through the “Hierarchy of Needs: A Theory of Human Motivation,” developed by psychologist Abraham Maslow. Through nursing, I feel like I have reached the fifth stage, self-actualization, which means “attaining one’s full potential as a human being living in the world.” 

Source: Nurse.com

By Nurse.com News

Process variations related to brain death have far-reaching implications beyond delaying an official declaration of death, including added stress for the patient’s family, missed opportunities for organ donation and increased costs of care, according to an article.

“Brain Death: Assessment, Controversy, and Confounding Factors,” published in the December issue of the journal Critical Care Nurse, urges the development of clear standards and uniform protocols for declaring a patient brain dead. It concludes that aggressive surveillance, patient advocacy and collaboration during all phases of care following severe brain injury are imperative — and as a primary provider of bedside care, nurses are well positioned as key team members to lead this charge.

The article also calls for timely and optimal clinical assessment, potentially identifying treatment opportunities before a brain injury progresses to a terminal stage. It advocates for consistent standards for determining brain death to facilitate protocol implementation, including uniform intervals for examinations necessary for determination of death due to neurological criteria.

Author Richard B. Arbour, RN, MSN, CCRN, CNRN, CCNS, reviews clinical factors related to brain injury, identifies and illustrates criteria for determining brain death and details confounding factors in brain death. He also discusses the role of bedside nurses and advanced practice nurses in caring for critically ill patients with a life-threatening brain injury.

“Bedside nurses are best positioned to recognize even subtle neurological changes after brain injury,” Arbour, a liver transplant coordinator at Thomas Jefferson University Hospital in Philadelphia, said in a news release. “These subtle changes can identify treatment opportunities to promote the primary goal of patient recovery well before consideration of a brain death protocol.

“Frontline clinicians are also trained to recognize a patient’s worsening neurological status and initiate formal, collaborative neurological evaluation for brain death, as clinically appropriate, and remain involved during a brain death protocol.”

After a patient is declared brain dead, according to the article, it is the nurse’s role to continue to provide optimal family communications, including addressing potential organ donation.

Arbour has more than 30 years of clinical experience in the care of critically ill patients with a focus on neuroscience critical care, organ donation/transplantation and end-of-life issues. He is widely published and recognized nationally and internationally for his expertise in end-of-life care, neuroscience critical care, organ donation and care of the organ transplant patient in both pre- and postoperative phases. 

Critical Care Nurse is the bimonthly clinical practice journal of the American Association of Critical Care Nurses. Article: http://ccn.aacnjournals.org/content/33/6/27.full

Source: Nurse.com 

By Don Walker of the Journal Sentinel

Rita Higgins was caring for Natalie Engeriser, her 11-year-old patient, when Natalie's mother, Katie, walked into a hospital room on the seventh floor of Children's Hospital of Wisconsin.

There's some kind of disturbance in the hallway, Natalie's mother told Higgins Thursday.

"When she said 'disturbance,' I was thinking one of the kiddos was having a hard time," Higgins said Saturday.

"I stepped into the hallway and I immediately realized something was wrong," Higgins said. "There were two nurses at the nursing station and by the looks on their faces, I knew something was wrong. I heard one of the nurses say, 'Oh my God, they are shooting. Call an active-shooter code.'"

A man police later identified as Ashanti Hendricks was armed and police were trying to arrest him. But Higgins, 37, a registered nurse who started working at Children's last February, didn't really know what was unfolding.

But Higgins, a mother of two just starting her third career, knew what to do, as did the rest of the medical staff.

"I immediately turned back around and I said to Natalie, 'Honey, I'm going to need you to get out of bed and me and your mom are going to help you get into the bathroom.' I was going to need them to go into the bathroom and lock the door behind them," she said.

Higgins wanted to be sure she didn't scare Natalie. The girl is one of Higgins' favorite patients. In fact, when Higgins arrived for work on Thursday, she had been assigned a different floor. Higgins was disappointed because she liked working with Natalie and had made strides in her care.

"A co-worker saw how disappointed I was," Higgins said. "A fellow nurse traded with me, basically. She said, 'Hey, Rita, I know you want to take care of Natalie.'"

Later, as the hospital went into lockdown, she was unsure what was unfolding on the unit. That's when she helped get Natalie out of harm's way.

"We got her and the medical equipment in the bathroom with mom," Higgins said. "I told her to lock the door. I looked them straight in the face and said, 'Don't open the door until I tell you to open the door.' I looked at Natalie and said, 'It's going to be OK.' And I closed the door."

At Children's, doors to the hospital rooms don't lock. But next to the closed door was a small window. As Higgins stood guard, protecting a mother and her little girl, she managed to peer out, trying to make sense of the noise, the chaos.

"Looking back on it, in the period of time when we truly did not know what was going on, we didn't know if someone was just literally shooting, and we didn't know police were involved," Higgins said. "There was that unknown period of time when you think, 'Is this door going to open with a guy with a gun?'"

"For all three of us, that was pretty horrible. All I know is that someone was on the unit with a gun. Shots had been fired," Higgins said.

At some point Higgins saw another nurse in the hallway who was watching a TV monitor where she could see police handcuffing the man elsewhere on the floor.

"That's when I stepped out of the room, looking at the monitor," Higgins said. "Seconds later, I heard more scuffling and the man was suddenly running onto my side down the hall and past me. I went back in the room and closed the door."

Police finally subdued him.

"I knew it was loud and so much stuff was going on," she said. "God knows what (Natalie and her mom) were thinking.

"I told them I was going to stay in here. I told them a bad guy was captured. I told them they were going to hear a lot of stuff."

Natalie and her mother came out of the bathroom. Higgins told Natalie and her mother to turn on the television and turn the volume up loud. Drown out the noise outside.

Two days after the ordeal, Higgins was full of praise for Natalie, her mother and the other nurses on the floor who performed calmly, admirably and courageously.

"I was thinking I was glad I stayed on the floor that day and that I was able to be there for Natalie," Higgins said. "You build up trust and she trusted me."

Later that night, when Higgins was about done for the day, a music therapist came with a guitar to visit Natalie.

The therapist played the Katy Perry hit, "Firework."

"That's the way I ended my shift, rocking out with Natalie with 'Firework,'" Higgins said.

Source: Milwaukee Wisconsin Journal Sentinel