Here’s an interesting option for people with Parkinson’s Disease to cope with the motor skills challenges they face every day. It’s another example of technology improving people’s lives.
Parkinson's Disease is a nervous system disorder that affects a person's movement. The most common sign of this disease is hand tremors. Other signs like stiffness or slow movement can also be common. Parkinson's Disease has symptoms that will worsen with progression of the condition over time. This disease has no cure but, medications or physical therapy programs can help improve symptoms.
Google Glass was a failure. At least, according to most people. But not for one specific group: people with Parkinson's. They've been experimenting with new software for Glass and say that it improves the quality of their lives.
People suffering from Parkinson's have challenges with their motor skills. Joy Esterberg, who was diagnosed with Parkinson's in 2003, compares the feeling to moving through mud. She was an early adopter of the Glass software, which has been in development for the last year.
"It is very sci-fi," Esterberg said of Glass. "What I like about it is that I can wear it at home. You have the little screen, you see David dancing, and you can follow the moves."
She's talking about David Leventhal, the director of the Mark Morris Dance Group's Dance for PD program, which has been offering free dance classes for people with Parkinson's since 2001.
When a user activates Glass, they can choose from a variety of different exercises, like "warm me up" or "balance me." Once selected, they see Leventhal or one of his co-teachers projected in front of them.
This technology is especially important because when people with Parkinson's walk down the street, they sometimes freeze up. In order to get going again, they often need to watch someone else's movements or footsteps. This can be problematic, especially if there's no one around.
The software, called Moving Through Glass, is based off exercises done in Leventhal's weekly class. The movements have roots in ballet and modern dance, and include a lot of extension exercises, which are particularly helpful for people with Parkinson's. Some students are very mobile, while others are confined to wheelchairs and exercise with assistance.
To get the Glass project going, Leventhal applied for a $25,000 Google (GOOG) grant. He got it, and then partnered with SS+K, a New-York based advertising agency with a strong focus on social responsibility. It developed the software for free through its innovation lab.
Though still in the pilot stage, it's hoped that the software will make people with Parkinson's more independent and confident when they go outside.
"It's surprisingly un-weird," Esterberg said. "In New York, nobody is going to look at you if you have something on your face. You'd have to have orange feathers sticking out of it for people to notice."
More and more of the students in her dance class will be using Glass as part of the program. There are about 50 people who attend each week in Brooklyn, and it's known as a place for camaraderie and acceptance.
"Everyone comes to dance class for a reason," Leventhal said. "Some people come to escape Parkinson's. Some people come because they want to work on specific skills related to balance or coordination or musicality."
There isn't data on how successful the class has been, but Levanthal said he sees it in students' stories. One student, he said, had been able to dance at a family member's wedding thanks to the class. Esterberg said she dances better now than she did before Parkinson's because she practices every day.
For now, the Glass software is still in the early stages, and the dance studio has 25 pairs available for students to borrow. However, the future is uncertain because Google stopped selling Glass earlier this year, saying it will focus on future incarnations.
Whatever Glass 2.0 looks like, Leventhal said his students will have a lot of feedback and, no matter what, they'll still be dancing. Esterberg certainly will be, and said she hopes more people will see that a diagnosis doesn't have to mean giving up.
"You can do new things," she said. "You don't have to just accept [that Parkinson's is] the end of everything. Because it really isn't."
Contributor: Jillian Eugenios and Erica Bettencourt
Story Source: CNN
There is a need for diversity in the health industry, especially Nurses. Having more diverse nurses will improve access to healthcare for racial and ethnic minority patients. Also those patients will be more comfortable and have higher satisfaction. Diversity must be increased at all levels especially educational institutions. More cultural healthcare programs and initiatives should be offered for students.
We found this interesting article about the growth of smartphone use and apps available to Nurses while at work. These apps are being used to research drugs, gather information about home care as well as diseases and disorders. This is an area that will continue to grow and hopefully provide much needed assistance to our hard-working Nurses.
A new survey indicates nurses are relying more than ever on their smartphone for clinical care – to the detriment of the so-called "doctor on call."
Conducted by InCrowd, a Boston-based market intelligence firm, the survey found that 95 percent of the 241 responding nurses own a smartphone and 88 percent use smartphone apps at work. More intriguing, 52 percent said they use an app instead of asking a colleague, and 32 percent said they consult their smartphone instead of a physician.
"The hospital gets very busy and there isn't always someone available to bounce ideas off of," one respondent said. Said another: "It's often easier to get the information needed using my smartphone – I don't have to wait for a response from a coworker."
Nurses have long been seen as an under-appreciated market for mHealth technology, and one that differs significantly from doctors, but that seems to be changing. Companies like Voalte are marketing communications platforms targeted at nurses, and even IBM has come out with a line of nurse-specific apps.
"There's a lot of untapped potential in the use of mobile apps for nursing," Judy Murphy, IBM's chief nursing officer, told mHealth News.
Unlike physicians, who are looking for apps that can retrieve information, enter orders and push notifications, nurses need apps that assist their workflow, offer quick information and coordinate multiple activities.
"It's all about care coordination," Murphy said. "Nurses want apps that can help them organize their day."
The ideal app will be simple in nature, so that it can be used quickly, and will help nurses organize several functions, from taking care of multiple patients to addressing orders from doctors, according to Murphy. Some tasks, like entering complex data into the EMR, actually clutter the form factor of the smartphone and are best handled at a workstation.
According to the InCrowd survey, nurses are quick to point out that their smartphones "enhance but don't substitute" for the physician, but when they're running around and need a quick question answered about medications, illnesses or symptoms, sometimes the app does the job more effectively – such as "in patient homecare situations when I need quick answers without making a bunch of phone calls," or "so I can make an educated suggestion to the doctor."
According to the survey, 73 percent of the nurses surveyed use their smartphones to look up drug information at the bedside, while 72 percent use it to look up various diseases or disorders. And befitting the various roles of the smartphone in the healthcare setting, 69 percent of nurses said they use their smartphones to stay in touch with colleagues. Other uses include viewing images and setting timers for medication administration.
Finally, the survey found that nurses are using smartphones in the workplace no matter who's paying for them. Some 87 percent of those surveyed said their employer isn't covering any costs related to the smartphone, while 9 percent are reimbursed for the cost of the monthly bill, 1 percent receive some reimbursement for the cost of the smartphone, and 3 percent are reimbursed for both the phone and the phone bill. Less than 1 percent, meanwhile, said their institution bans the use of personal smartphones while on duty.
"We're hitting the tip of the iceberg here with apps that a nurse will want and will use," Murphy said.
SEVERAL emergency-room nurses were crying in frustration after their shift ended at a large metropolitan hospital when Molly, who was new to the hospital, walked in. The nurses were scared because their department was so understaffed that they believed their patients — and their nursing licenses — were in danger, and because they knew that when tensions ran high and nurses were spread thin, patients could snap and turn violent.
The nurses were regularly assigned seven to nine patients at a time, when the safe maximum is generally considered four (and just two for patients bound for the intensive-care unit). Molly — whom I followed for a year for a book about nursing, on the condition that I use a pseudonym for her — was assigned 20 patients with non-life-threatening conditions.
“The nurse-patient ratio is insane, the hallways are full of patients, most patients aren’t seen by the attending until they’re ready to leave, and the policies are really unsafe,” Molly told the group.
That’s just how the hospital does things, one nurse said, resigned.
Unfortunately, that’s how many hospitals operate. Inadequate staffing is a nationwide problem, and with the exception of California, not a single state sets a minimum standard for hospital-wide nurse-to-patient ratios.
Dozens of studies have found that the more patients assigned to a nurse, the higher the patients’ risk of death, infections, complications, falls, failure-to-rescue rates and readmission to the hospital — and the longer their hospital stay. According to one study, for every 100 surgical patients who die in hospitals where nurses are assigned four patients, 131 would die if they were assigned eight.
In pediatrics, adding even one extra surgical patient to a nurse’s ratio increases a child’s likelihood of readmission to the hospital by nearly 50 percent. The Center for Health Outcomes and Policy Research found that if every hospital improved its nurses’ working conditions to the levels of the top quarter of hospitals, more than 40,000 lives would be saved nationwide every year.
Nurses are well aware of the problem. In a survey of nurses in Massachusetts released this month, 25 percent said that understaffing was directly responsible for patient deaths, 50 percent blamed understaffing for harm or injury to patients and 85 percent said that patient care is suffering because of the high numbers of patients assigned to each nurse. (The Massachusetts Nurses Association, a labor union, sponsored the study; it was conducted by an independent research firm and the majority of respondents were not members of the association.)
And yet too often, nurses are punished for speaking out. According to the New York State Nurses Association, this month Jack D. Weiler Hospital of the Albert Einstein College of Medicine in New York threatened nurses with arrest, and even escorted seven nurses out of the building, because, during a breakfast to celebrate National Nurses Week, the nurses discussed staffing shortages. (A spokesman for the hospital disputed this characterization of the events.)
It’s not unusual for hospitals to intimidate nurses who speak up about understaffing, said Deborah Burger, co-president of National Nurses United, a union. “It happens all the time, and nurses are harassed into taking what they know are not safe assignments,” she said. “The pressure has gotten even greater to keep your mouth shut. Nurses have gotten blackballed for speaking up.”
The landscape hasn’t always been so alarming. But as the push for hospital profits has increased, important matters like personnel count, most notably nurses, have suffered. “The biggest change in the last five to 10 years is the unrelenting emphasis on boosting their profit margins at the expense of patient safety,” said David Schildmeier, a spokesman for the Massachusetts Nurses Association. “Absolutely every decision is made on the basis of cost savings.”
Experts said that many hospital administrators assume the studies don’t apply to them and fault individuals, not the system, for negative outcomes. “They mistakenly believe their staffing is adequate,” said Judy Smetzer, the vice president of the Institute for Safe Medication Practices, a consumer group. “It’s a vicious cycle. When they’re understaffed, nurses are required to cut corners to get the work done the best they can. Then when there’s a bad outcome, hospitals fire the nurse for cutting corners.”
Nursing advocates continue to push for change. In April, National Nurses United filed a grievance against the James A. Haley Veterans’ Hospital in Tampa, which it said is 100 registered nurses short of the minimum staffing levels mandated by the Department of Veterans Affairs (the hospital said it intends to hire more nurses, but disputes the union’s reading of the mandate).
Nurses are the key to improving American health care; research has proved repeatedly that nurse staffing is directly tied to patient outcomes. Nurses are unsung and underestimated heroes who are needlessly overstretched and overdue for the kind of recognition befitting champions. For their sake and ours, we must insist that hospitals treat them right.
The Nursing profession is in dire need of an IT upgrade. The way the nursing profession currently handles information is costing time, money, patient health and more importantly, lives. Creating an integrated health IT system will address these costs, as well as reducing errors among hospital staff and mistakes with prescriptions both when they are written and when patients obtain them.
To learn more checkout the following infographic, created by the Adventist University of Health Sciences Online RN to BSN program, that illustrates the need, benefit and impact of Health IT in nursing.
With her children grown and husband nearing retirement, Amy Reynolds was ready to leave behind snowy Flagstaff, Ariz., to travel but she wasn't ready to give up her nursing career.
She didn't have to.
For the past three years, Reynolds, 55, has been a travel nurse – working for about three months at a time at hospitals in California, Washington, Texas and Idaho, among other states. Her husband accompanies her on the assignments. "It's been wonderful," she said in May after starting a stint in Sacramento. "It's given us a chance to try out other parts of the country."
Reynolds is one of thousands of registered nurses who travel the country helping hospitals and other health care facilities in need of experienced, temporary staff.
With an invigorated national economy and millions of people gaining health coverage under the Affordable Care Act, demand for nurses such as Reynolds is at a 20-year high, industry analysts say. That's meant Reynolds has her pick of hospitals and cities when it's time for her next assignment. And it's driven up stock prices of the largest publicly traded travel-nurse companies, including San Diego-based AMN Healthcare Services and Cross Country Healthcare of Boca Raton, Fla.
"We've seen a broad uptick in health care employment, which the staffing agencies are riding," said Randle Reece, an analyst with investment firm Avondale Partners. He estimates the demand for nurses and other health care personnel is at its highest level since the mid-1990s.
Demand for travel nursing is expected to increase by 10% this year "due to declining unemployment, which raises demand by increasing commercial admissions to hospitals," according to Staffing Industry Analysts, a research firm. That trend is expected to accelerate, the report said, because of higher hospital admissions propelled by the health law.
Improved profits — particularly in states that expanded Medicaid — have also made hospitals more amenable to hire travel nurses to help them keep up with rising admissions, analysts say.
At AMN Healthcare, the nation's largest travel-nurse company, demand for nurses is up significantly in the past year: CEO Susan Salka said orders from many hospitals have doubled or tripled in recent years. Much of the demand is for nurses with experience in intensive care, emergency departments and other specialty areas. "We can't fill all the jobs that are out there," she said.
Northside Hospital in Atlanta is among hospitals that have recently increased demand for travel nurses, said David Votta, manager of human resources. "It's a love-hate relationship," he said. From a financial viewpoint, the travel nurses can cost significantly more per hour than regular nurses. But the travel nurses provide a vital role to help the hospital fills gaps in staffing so they can serve more patients.
Northside is using 40 travel nurses at its three hospitals, an increase of about 52% since last year. The system employs about 4,000 nurses overall.
Historically, the most common reason why hospitals turn to traveling nurses is seasonal demand, according to a 2011 study by accounting firm KPMG. Nearly half of hospitals surveyed said seasonal influxes in places such as Arizona or Florida, where large numbers of retirees flock every winter, led them to hire traveling nurses.
Though there have been rare reports of travel nurses involved in patient safety problems, a 2012 study by researchers at the University of Pennsylvania published in the Journal of Health Services Research found no link between travel nurses and patient mortality rates. The study examined more than 1.3 million patients and 40,000 nurses in more than 600 hospitals. "Our study showed these nurses could be lifesavers. Hiring temporary nurses can alleviate shortages that could produce higher patient mortality," said Linda Aiken, director of the university's Center for Health Outcomes and Policy Research. The study was funded by the National Institutes of Health and the American Staffing Association Foundation.
The staffing companies screen and interview nurses to make sure they are qualified, and some hospitals, such as Northside, also make their own checks. Nurses usually spend a couple days getting orientated to a hospital and its operations before beginning work. They have to be licensed in each state they practice in, although about 20 states have reciprocity laws that expedite the process.
Cherisse Dillard, a labor and delivery room nurse, has been a traveler for nearly a decade. In the past few years, she's worked at hospitals in Chicago, Dallas, Houston, Pensacola and the San Francisco area.
While delivering a baby is relatively standard practice, she said she makes it a practice at each new hospital to talk to doctors and other staff to learn what their preferences are with drugs and other procedures. Dillard, 46, often can negotiate to be off on weekends and be paid a high hourly rate. "When the economy crashed in 2008, hospitals became tight with their budget and it was tough to find jobs, but now it's back to full swing and there are abundant jobs for travel nurses," she said.
If you're in the hospital or a nursing home, the last thing you want to be dealing with is bedbugs. But exterminators saying they're getting more and more calls for bedbug infestations in nursing homes, hospitals and doctor's offices.
Nearly 60 percent of pest control professionals have found bedbugs in nursing homes in the past year, according to an industry survey, up from 46 percent in 2013. Bedbug reports in other medical facilities have gone up slightly. Thirty-six percent of exterminators reported seeing them in hospitals, up from 33 percent. Infestations seen in doctors' offices rose from 26 percent to 33 percent in the past two years.
"Nursing homes would be difficult to treat for the simple reason you don't use any pesticides there," says Billy Swan, an exterminator who runs a pest-control company in New York City. That and the fact that there's a lot more stuff. "Somebody's gotta wash and dry all the linens, you know, and all their personal artifacts and picture frames."
Those personal belongings might help account for the big disparity in infestations between nursing homes and hospitals, according to Dr. Silvia Munoz-Price, an epidemiologist at the Medical College of Wisconsin who studies infection control in health care facilities. "The more things you bring with you, the more likely you're bringing bedbugs, if you have a bedbug problem... and you live in a nursing home, so all your things are there."
By contrast, "When bedbugs are located in a hospital, they're usually confined to a couple of hospital rooms," Munoz-Price says.
And it may be easier for hospital staff to spot bedbugs.
"Hospital cleaning staff, nurses, doctors are extremely vigilant," says Jim Fredericks, chief entomologist for the National Pest Management Association, which conducted the survey along with the University of Kentucky. "[Bedbugs] don't go unnoticed for long."
And hospitals are typically brightly lit, routinely cleaned places. It's just much easier to find pests in this setting than in a dark movie theater, where only 16 percent of pest professionals report seeing bedbugs, according to the survey.
Fredericks says the recent multiplication of bedbug reports in medical facilities is just a part of a larger trend. Exterminators have been finding more of the bugs everywhere the parasites are most commonly found like hotels, offices, and homes, where virtually 100 percent of pest control professionals have treated bedbugs in the past year. And they've been popping up in a few unexpected places, too, like a prosthetic leg and in an occupied casket.
"There are a lot of theories as to why they've made a comeback," Fredericks says. It could be differences in pest management practices, insecticide resistance, or just increased travel. "Bottom line is nobody knows what caused it, but bedbugs are back." He falters for a moment. "And they're most likely here to stay."
The good news is bedbugs aren't known to transmit any diseases, and a quick inspection under mattresses or in the odd nook or cranny while traveling can lower the risk of picking the hitchhiking bugs up. Swan says a simple wash or freezing will kill any bedbug. "If you came home, took off all your clothes, put 'em in a bag – you'd never bring a bedbug home," he says. "But who does that?"
At least one reporter might start.
There are just a handful of psychiatrists in all of western Nebraska, a vast expanse of farmland and cattle ranches. So when Murlene Osburn, a cattle rancher turned psychiatric nurse, finished her graduate degree, she thought starting a practice in this tiny village of tumbleweeds and farm equipment dealerships would be easy.
It wasn’t. A state law required nurses like her to get a doctor to sign off before they performed the tasks for which they were nationally certified. But the only willing psychiatrist she could find was seven hours away by car and wanted to charge her $500 a month. Discouraged, she set the idea for a practice aside and returned to work on her ranch.
“Do you see a psychiatrist around here? I don’t!” said Ms. Osburn, who has lived in Wood Lake, population 63, for 11 years. “I am willing to practice here. They aren’t. It just gets down to that.”
But in March the rules changed: Nebraska became the 20th state to adopt a law that makes it possible for nurses in a variety of medical fields with most advanced degrees to practice without a doctor’s oversight. Maryland’s governor signed a similar bill into law this month, and eight more states are considering such legislation, according to the American Association of Nurse Practitioners. Now nurses in Nebraska with a master’s degree or better, known as nurse practitioners, no longer have to get a signed agreement from a doctor to be able to do what their state license allows — order and interpret diagnostic tests, prescribe medications and administer treatments.
“I was like, ‘Oh, my gosh, this is such a wonderful victory,’” said Ms. Osburn, who was delivering a calf when she got the news in a text message.
The laws giving nurse practitioners greater autonomy have been particularly important in rural states like Nebraska, which struggle to recruit doctors to remote areas. About a third of Nebraska’s 1.8 million people live in rural areas, and many go largely unserved as the nearest mental health professional is often hours away.
“The situation could be viewed as an emergency, especially in rural counties,” said Jim P. Stimpson, director of the Center for Health Policy at the University of Nebraska, referring to the shortage.
Groups representing doctors, including the American Medical Association, are fighting the laws. They say nurses lack the knowledge and skills to diagnose complex illnesses by themselves. Dr. Robert M. Wah, the president of the A.M.A., said nurses practicing independently would “further compartmentalize and fragment health care,” which he argued should be collaborative, with “the physician at the head of the team.”
Dr. Richard Blatny, the president of the Nebraska Medical Association, which opposed the state legislation, said nurse practitioners have just 4 percent of the total clinical hours that doctors do when they start out. They are more likely than doctors, he said, to refer patients to specialists and to order diagnostic imaging like X-rays, a pattern that could increase costs.
Nurses say their aim is not to go it alone, which is rarely feasible in the modern age of complex medical care, but to have more freedom to perform the tasks that their licenses allow without getting a permission slip from a doctor — a rule that they argue is more about competition than safety. They say advanced-practice nurses deliver primary care that is as good as that of doctors, and cite research that they say proves it.
What is more, nurses say, they are far less costly to employ and train than doctors and can help provide primary care for the millions of Americans who have become newly insured under the Affordable Care Act in an era of shrinking budgets and shortages of primary care doctors. Three to 14 nurse practitioners can be educated for the same cost as one physician, according to a 2011 report by the Institute of Medicine, a prestigious panel of scientists and other experts that is part of the National Academy of Sciences.
In all, nurse practitioners are about a quarter of the primary care work force, according to the institute, which called on states to lift barriers to their full practice.
There is evidence that the legal tide is turning. Not only are more states passing laws, but a February decision by the Supreme Court found that North Carolina’s dental board did not have the authority to stop dental technicians from whitening teeth in nonclinical settings like shopping malls. The ruling tilted the balance toward more independence for professionals with less training.
“The doctors are fighting a losing battle,” said Uwe E. Reinhardt, a health economist at Princeton University. “The nurses are like insurgents. They are occasionally beaten back, but they’ll win in the long run. They have economics and common sense on their side.”
Nurses acknowledge they need help. Elizabeth Nelson, a nurse practitioner in northern Nebraska, said she was on her own last year when an obese woman with a dislocated hip showed up in the emergency room of her small-town hospital. The hospital’s only doctor came from South Dakota once a month to sign paperwork and see patients.
“I was thinking, ‘I’m not ready for this,’ ” said Ms. Nelson, 35, who has been practicing for three years. “It was such a lonely feeling.”
Ms. Osburn, 55, has been on the plains her whole life, first on a sugar beet farm in eastern Montana and more recently in the Sandhills region of Nebraska, a haunting, lonely landscape of yellow grasses dotted with Black Angus cattle. She has been a nurse since 1982, working in nursing homes, hospitals and a state-run psychiatric facility.
As farming has advanced and required fewer workers, the population has shrunk. In the 1960s, the school in Wood Lake had high school graduating classes. Now it has only four students. Ms. Osburn and her family are the only ones still living on a 14-mile road. Three other farmhouses along it are vacant.
The isolation takes a toll on people with mental illness. And the culture on the plains — self-reliance and fiercely guarded privacy — makes it hard to seek help. Ms. Osburn’s aunt had schizophrenia, and her best friend, a victim of domestic abuse, committed suicide in 2009. She herself suffered through a deep depression after her son died in a farm accident in the late 1990s, with no psychiatrist within hundreds of miles to help her through it.
“The need here is so great,” she said, sitting in her kitchen with windows that look out over the plains. She sometimes uses binoculars to see whether her husband is coming home. “Just finding someone who can listen. That’s what we are missing.”
That conviction drove her to apply to a psychiatric nursing program at the University of Nebraska, which she completed in December 2012. She received her national certification in 2013, giving her the right to act as a therapist, and to diagnose and prescribe medication for patients with mental illness. The new state law still requires some supervision at first, but it can be provided by another psychiatric nurse — help Ms. Osburn said she would gladly accept.
Ms. Nelson, the nurse who treated the obese patient, now works in a different hospital. These days when she is alone on a shift, she has backup. A television monitor beams an emergency medicine doctor and staff into her workstation from an office in Sioux Falls, S.D. They recently helped her insert a breathing tube in a patient.
The doctor shortage remains. The hospital, Brown County Hospital in Ainsworth, Neb., has been searching for a doctor since the spring of 2012. “We have no malls and no Walmart,” Ms. Nelson said. “Recruitment is nearly impossible.”
Ms. Osburn is looking for office space. The law will take effect in September, and she wants to be ready. She has already picked a name: Sandhill Behavioral Services. Three nursing homes have requested her services, and there have been inquiries from a prison.
“I’m planning on getting in this little car and driving everywhere,” she said, smiling, behind the wheel of her 2004 Ford Taurus. “I’m going to drive the wheels off this thing.”
By Stephanie O'Neill
It's the same age as Brittany Maynard, who last year was diagnosed with terminal brain cancer. Maynard, of northern California, opted to end her life via physician-assisted suicide in Oregon last fall. Maynard's quest for control over the end of her life continues to galvanize the "aid-in-dying" movement nationwide, with legislation pending in California and a dozen other states.
But unlike Maynard, Packer says physician-assisted suicide will never be an option for her.
"Wanting the pain to stop, wanting the humiliating side effects to go away -- that's absolutely natural," Packer says. "I absolutely have been there, and I still get there some days. But I don't get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn't have to be."
A recent spring afternoon in Packer's kitchen is a good day, as she prepares lunch with her four children.
"Do you want to help?" she asks the eager crowd of siblings gathered tightly around her at the stovetop.
"Yeah!" yells 5-year-old Savannah.
"I do!" says Jacob, 8.
Managing four kids as each vies for the chance to help make chicken salad sandwiches can be trying. But for Packer, these are the moments she cherishes.
Diagnosis and pain
In 2012, after suffering a series of debilitating lung infections, she went to a doctor who diagnosed her with scleroderma. The autoimmune disease causes hardening of the skin and, in about a third of cases, other organs. The doctor told Packer that it had settled in her lungs.
"And I said, 'OK, what does this mean for me?'" she recalls. "And he said, 'Well, with this condition...you have about three years left to live.'"
Initially, Packer recalls, the news was just too overwhelming to talk about with anyone --including her husband.
"So we just...carried on," she says. "And it took us about a month before my husband and I started discussing (the diagnosis). I think we both needed to process it separately and figure out what that really meant."
Packer, 32, is on oxygen full time and takes a slew of medications.
She says she has been diagnosed with a series of conditions linked to or associated with scleroderma, including the auto-immune disease, lupus, and gastroparesis, a disorder that interferes with proper digestion.
Packer's various maladies have her in constant, sometimes excruciating pain, she says, noting that she also can't digest food properly and is always "extremely fatigued."
Some days are good. Others are consumed by low energy and pain that only sleep can relieve.
"For my kids, I need to be able to control the pain because that's what concerns them the most," she adds.
Faith and fear
Packer and her husband Brian, 36, are devout Catholics. They agree with their church that doctors should never hasten death.
"We're a faith-based family," he says. "God put us here on earth and only God can take us away. And he has a master plan for us, and if suffering is part of that plan, which it seems to be, then so be it."
They also believe if the California bill on physician-assisted suicide, SB 128, passes, it would create the potential for abuse. Pressure to end one's life, they fear, could become a dangerous norm, especially in a world defined by high-cost medical care.
"Death can be beautiful"
Instead of fatal medication, Stephanie says she hopes other terminally ill people consider existing palliative medicine and hospice care.
"Death can be beautiful and peaceful," she says. "It's a natural process that should be allowed to happen on its own."
Stephanie's illness has also forced the Packers to make significant changes. Brian has traded his full-time job at a lumber company for that of weekend handyman work at the family church. The schedule shift allows him to act as primary caregiver to Stephanie and the children. But the reduction in income forced the family of six to downsize to a two-bedroom apartment it shares with a dog and two pet geckos.
Even so, Brian says, life is good.
"I have four beautiful children. I get to spend so much more time with them than most head of households," he says. "I get to spend more time with my wife than most husbands do."
And it's that kind of support from family, friends and those in her community that Stephanie says keeps her living in gratitude, even as she struggles with the realization that she will not be there to see her children grow up.
"I know eventually that my lungs are going to give out, which will make my heart give out, and I know that's going to happen sooner than I would like — sooner than my family would like," she says. "But I'm not making that my focus. My focus is today."
Stephanie says she is hoping for a double-lung transplant, which could give her a few more years. In the meantime, next month marks three years since her doctor gave her three years to live.
So every day, she says, is a blessing.
By Darius Tahir
In the fall of 2012, Nick Valilis was diagnosed with leukemia just as he was starting medical school. In treatment he found it difficult to remember to take his medications at the proper time and in the right order.
“He struggled handling the sheer complexity,” said Rahul Jain, Valilis' classmate at Duke University. “He went from no meds to 10 meds a day. How is an 85-year-old cancer patient supposed to handle that same regimen?”
Since then, Jain, Valilis and a few other Duke classmates have formed a startup company called TowerView Health with the goal of making it easier for patients to manage their medication regimens. Jain is CEO of the company, which was incorporated last year; Valilis is chief medical officer. They are about to launch a clinical trial, in partnership with Independence Blue Cross and Penn Medicine in Philadelphia, to test whether their technological solution helps patients understand and comply with their drug regimens.
That could be an important innovation. Poor medication adherence is estimated to cause as much as $290 billion a year in higher U.S. medical costs, as well as a big chunk of medication-related hospital admissions.
TowerView has developed software and hardware that reminds patients and their clinicians about medication schedules, and warns them when a patient is falling off track.
Dr. Ron Brooks, senior medical director for clinical services at Independence Blue Cross, said he thinks TowerView's solution is a notable improvement over previous medication-adherence technology. “Most of the apps I've seen are reminder apps,” he said. “It might remind you to take a medication, but you have to input that you actually take it. There's no closing of the loop.” By contrast, TowerView automatically provides reminders and tracking, with the opportunity for clinician follow-up.
Here's how TowerView's system works. When clinicians prescribe drugs and develop a medications schedule for a patient, the scrips and schedule are sent to a mail-order pharmacy that has partnered with TowerView. The pharmacy splits the medications into the scheduled dosages on a prescription-drug tray. The tray is labeled with the schedule and sent to the patient, who places the tray into an electronic pillbox, which senses when pills are taken out of each tray compartment.
The pillbox sensors communicate with connected software through a cellular radio when patients have taken their pills and when it's time to remind them—either through a text message, phone call or the pillbox lighting up—that they've missed a dose. The system also compiles information for providers about the patient's history of missed doses, enabling the provider to personally follow up with the patient.
But some question whether tech solutions are the most effective way to improve medication adherence. A 2013 literature review in the Journal of the American Pharmacists Association identified nearly 160 medication-adherence apps and found poor-quality research evidence supporting their use.
Experts say it's not clear whether apps and devices can address the underlying reasons why patients don't comply with their drug regimens. For instance, patients simply might not like taking their drugs because of side effects or other issues. “I'd wager that improved adherence—and a range of other health benefits—are ultimately more likely to be achieved not by clever apps and wireless gadgets, but rather by an empathetic physician who understands, listens and is trusted by her patients,” Dr. David Shaywitz, chief medical officer at DNAnexus, a network for sharing genomic data, recently wrote.
Jain doesn't disagree. He notes that his firm's system empowers empathetic clinicians to provide better care. “This solution allows more of a communication element,” he said. “We'll be able to understand why patients don't take their meds.”
That system soon will be put to the test in a randomized clinical trial. TowerView and Independence Blue Cross are enrolling 150 diabetic patients who are noncompliant with their medication regimens; half of those participants will receive usual care. The goal is to improve compliance by at least 10% over six months.
If it works, Jain and his company hope to sell the product to insurers and integrated healthcare providers working under risk-based contracts. The idea is that patients' improved adherence will reduce providers' hospitalization and other costs and boost their financial performance.