Health and Disability

Complex regional pain syndrome is a rare chronic pain disorder that typically affects the leg or arm.

One sign of a movement’s progress is when the establishment takes notice. This one’s a biggie: Regina Holliday’s Walking Gallery of Healthcare (Facebook) is in the January 16 edition of the AMA Journal of Ethics. A five page article! Click the image to view it.

We’ve said since the founding of our society that participatory medicine is a movement – a social movement. One of the most conspicuous signs of this movement has been the artist / activist @ReginaHolliday and her Walking Gallery of Healthcare – over 400 jackets she and other artists have painted for people, putting their medical story on their jacket, gratis, because “everyone’s got a medical story but nobody can see them.” This ongoing project for “art in the environment” fixes that. (See her post this week that lists all the artists and jackets.)

Regina has done 348 jackets; 42 other artists have done 53 more, all free* if you’ll wear them to conferences – because believe me, they start conversations about healthcare. And that’s how movements grow.

The Danish system offers lessons for policymakers in the United States, where medical harm remains widespread and the mechanisms for addressing it are often cumbersome and adversarial. The Danes’ primary focus is on helping patients who have been hurt by the health care system. While the reams of data gathered from claims aren’t used to publicly rate doctorsand hospitals, or to systematically search for bad actors, they can help flag providers who have repeat errors and may pose a risk.

For the past three years, ProPublica has asked patients who’ve been harmed and their family members for their stories. We’ve heard the same things time and time again: After a medical error comes a struggle to get straight answers and accountability. Financial compensation for additional care, pain, disability or lost work is reserved only for a relative few.

The U.S. system for compensating injured patients — medical malpractice lawsuits — effectively shuts out patients when the potential damages are small. Proving negligence, the usual standard for winning compensation, is difficult. There are scant incentives for doctors and hospitals to apologize, reveal details about what happened, or report errors that might unveil a pattern.

Denmark offers a radically different alternative, as do similar programs in otherScandinavian countries and New Zealand. To be sure, these countries have nationalized health care systems, unlike the public-private model in the U.S. But alternative responses to patient harm have been tried on a smaller scale. Virginia, for example, has a program designed to compensate for severe neurological childbirth injuries that is similar in some ways to the Danish system.

Common to all these programs is a commitment to provide information and compensation to patients regardless of whether negligence is involved. That lowers the bar of entry for patients and doesn’t pit doctors against them, enabling providers to be open about what happened.

First of all, chronic pain is big business. Odds are that if you are in pain, then you are probably helping make somebody a lot of money. I bet you never thought that your pain was the focus of bonuses, corporate takeovers, kickbacks and expensive advertising campaigns, but it absolutely is. The latest data from the Institute of Medicine estimates that more than 100 million Americans experience chronic pain. That is a big target, and one that is desperate for help.

According to IMS Health, a company that tracks sales for drug companies, Vicoden, an opioid-based pain killer, is the most commonly prescribed medication in the country, and almost 20 percent of all doctor visits involve a prescription for opioids. Drug companies know that the prescription of opioid-based pills is "the gift that keeps on giving" because once folks start taking them they won't stop because of the physical dependence they create. I think it is fair to say that there have been some pretty successful business plans out there!

Shouldn't the fact that chronic pain sufferers are now getting more access to the strongest pain killers on the planet and at higher dosages mean that we are now doing a better job helping them manage their pain? Guess again. In my 15 years of practice, I have yet to see a scientifically sound study that can show significant benefit from the long-term use of opioid medications for chronic pain in a large patient population.

There are many reasons for this including problems with tolerance, addiction and a newer discovery known as opioid-induced hyperalgesia (OIH) -- where opioid medications eventually cause some to get even more sensitive to pain. That would be akin to insulin shots making your glucose go up instead of down. If you have never heard of OIH, then my guess you is will get an earful about it once a drug company comes up with a supposed pill to treat it. Did you ever hear of ED before Viagra? Unfortunately, statistics can't describe the heartache I see every day from the over-dependence on medications.

In no way are the problems with pain management strictly limited to the misguided use of pills. For example, over the last two decades there has been an exponential rise in the use of spine surgery and interventional procedures for the treatment of lower back pain. Rapid growth has taken place in the use of more complex and costly spinal fusion surgeries, and there is cut-throat competition among the manufacturers of the hardware used in these procedures. Medtronic alone makes $3 billion annually off of its spinal device unit. Again, research has consistently shown that such treatments are no more effective for low back pain than much lower cost alternatives such as aggressive rehabilitation. What the data can't describe is what some patients and their families go through for months and years trying to recover and get their lives back after having these types of surgeries.

For years now, evidence-based medicine and scientific outcome studies have consistently shown that the most effective way to treat chronic pain is through comprehensive interdisciplinary pain programs. In 2006 the American Pain Society'sJournal of Pain published the most comprehensive and thorough review of all chronic pain treatments to date. No matter what criteria they looked at, including improved pain levels, function, return-to-work rates and cost-containment, outcome studies demonstrated that such programs gave the best long-term results. The authors concluded that "the only therapeutic approach that has shown efficacy and cost-effectiveness is a chronic pain program" and "there is unequivocal evidence for chronic pain programs." Sadly, there are very few of these types of programs out there. Having run this type of treatment for ten years now, I could bore you with the details of all of the challenges I have faced trying to "do the right thing," but instead let me focus on the rewards.

“The social worker told me that "everyone gets tired" 

“The social worker said I should go swimming every week and do more exercise even though she could see I couldn't even stand up without falling onto the floor and my legs were going into visible spasms on that day.”

These statements from social care professionals echo messages in the media just a few weeks ago claiming that ME is “not a real illness” and can be cured by positive thinking and exercise. Statements of this kind have been popping up in the mainstream media for the last 30 years. They occur every time a certain highly organised and highly influential group of psychiatrists publishes the result of a trial of treatment for ME involving exercise therapy and/or cognitive behavioural therapy claiming positive results. It would not be surprising if they had influenced social care professionals’ attitudes to people with ME.

The peculiar stigma of ME/CFS is this: as author Toni Bernard put it, we have been branded not credible witnesses to our own condition.

“The population is shifting faster than the ability of nursing homes to deal with them,” said Cheryl Phillips, a senior vice president at LeadingAge, an association of nonprofit providers of services for older adults. “We don’t have adequate staff. We don’t have adequate equipment. We don’t have adequate knowledge.”

The percentage of those entering American nursing homes who are moderate and severely obese — with a body mass index of 35 or greater — has risen sharply, to nearly 25 percent in 2010 from 14.7 percent in 2000,according to a recent study, and many signs suggest the upward trend is continuing.

But as demand from severely obese patients surges, nursing home administrators say they cannot afford to care for them, because Medicaid, which covers more than 60 percent of all nursing home residents, does not reimburse them for the specialized equipment required: motorized lifts; larger wheelchairs, bedside commodes and shower chairs; and longer intramuscular needles and blood pressure cuffs. The devices are expensive: $10,000 for a mechanical lift, for instance, and $5,000 for an extra-wide bed.

“It’s really not a moneymaker,”

I suspect that music, whether it is called therapeutic or not, has a similar effect....

Patients with Chronic Obstructive Pulmonary Disease (COPD) and other chronic respiratory disorders who received music therapy in conjunction with standard rehabilitation saw an improvement in symptoms, psychological well-being and quality of life compared to patients receiving rehabilitation alone, according to a new study by researchers at The Louis Armstrong Center of Music and Medicine at Mount Sinai Beth Israel (MSBI). Study findings were published this week in Respiratory Medicine and suggest that music therapy may be an effective addition to traditional treatment.

COPD is the fourth leading cause of death in the United States with symptoms including shortness of breath, wheezing, an ongoing cough, frequent colds or flu, and chest tightness. Patients with COPD are often socially isolated, unable to get to medical services and underserved in rehabilitation programs, making effective treatment difficult.

"The care of chronic illness is purposefully shifting away from strict traditional assessments that once focused primarily on diagnosis, morbidity and mortality rates," said Joanne Loewy, DA, Director of the Louis Armstrong Center for Music and Medicine at MSBI, where the study was conducted. "Instead, the care of the chronically ill is moving toward methods that aim to preserve and enhance quality of life of our patients and activities of daily living through identification of their culture, motivation, caregiver/home trends and perceptions of daily wellness routines."

Nursing home workers across the country are posting embarrassing and dehumanizing photos of elderly residents on social media networks such as Snapchat, violating their privacy, dignity and, sometimes, the law.

ProPublica has identified 35 instances since 2012 in which workers at nursing homes and assisted-living centers have surreptitiously shared photos or videos of residents, some of whom were partially or completely naked. At least 16 cases involved Snapchat, a social media service in which photos appear for a few seconds and then disappear with no lasting record.

Some have led to criminal charges, including a case filed earlier this month in California against a nursing assistant. Most have not, even though posting patients’ photos without their permission may violate the Health Insurance Portability and Accountability Act, the federal patient privacy law that carries civil and criminal penalties.

The incidents illustrate the emerging threat that social media poses to patient privacy and, at the same time, its powerful potential for capturing transgressions that previously might have gone unrecorded. Abusive treatment is not new at nursing homes. Workers have been accused of sexually assaulting residents, sedating them with antipsychotic drugs and failing to change urine-soaked bed sheets. But the posting of explicit photos is a new type of mistreatment — one that sometimes leaves its own digital trail.

A randomized, controlled trial that provided delivered meals to seniors revealed that receiving adequate nutrition at home resulted in more than just physical benefits. Delivered meals made seniors feel less lonely compared to those who did not receive meals or received them less frequently.

“This continues to build the body of evidence that home-delivered meals provide more than nutrition and food security,” Kali Thomas, study lead author, assistant professor (research) of health services, policy and practice in the Brown University School of Public Health and a researcher at the Providence Veterans Affairs Medical Center, said.

Treating adults with chronic pain has its difficulties, but treating children with the condition is even more challenging; there is little evidence on effective drug therapies for chronic pain in children, and health professionals are often wary of providing certain treatments to youngsters because of their vulnerability during growth and the fear of possible long-term health implications.

"Effective treatment of pain can be particularly difficult because it's subjective; but with children, it is increasingly difficult because a child may not be able to communicate effectively depending on the age and accurate recognition of pain," adds Johnson.

Each participant attended eight sessions in which they received an individually tailored acupuncture treatment, with each treatment lasting around 30 minutes.

Using the Adolescent Pediatric Pain Tool (APPT), participants rated their pain and nausea before and after each treatment. The APPT asks patients to disclose pain areas through a body outline diagram and describe pain intensity through circling words such as "no pain" and "worst possible pain."

The researchers found that participants reported a significant reduction in pain throughout the entire eight sessions and from the beginning to end of each individual session, with greater pain reduction reported in the earlier sessions.

What is more, through the completion of the Pediatric Quality of Life Inventory, the researchers found patients experienced improvements in overall health and reductions in social, emotional and educational problems.