Health and Disability

Nevertheless, I couldn’t help asking myself throughout her ordeal if the care my mother was receiving met the standards of patient-centered care for which we are all so strenuously advocating. The John A. Hartford Foundation recently posted a blog about patient-centered care in acute settings, and the authors’ admonition to “Think about the System” really resonates with me. The things that worried me about my mom’s care in the hospital all seemed to stem from systematized behavior that was centered around somebody’s needs, but that somebody didn’t seem to be my mother.

For example, doctors would visit my mother at 4:00 and 5:00 a.m. when neither my father nor I were there. They would awaken her, update her about her medical condition and leave. As the days unfolded, it became clear that the “system” was organized for doctors to do rounds before the day’s surgeries and clinical office hours. For them, pre-dawn visits were a convenient time. But was that the best time for my mom? Was that patient-centered care, or surgeon-centered care? The big problem with this system was that it resulted in very poor actionable communication with the patient and her supporting caregiver system – in this case, my father and me. “Drs. 4:00 and 5:00 a.m.” would awaken my mom and explain what was going on with her medically. At no point did my mother ever remember a single thing they ever told her. How could she, given her exhaustion and the narcotics she was taking? Technically, her doctors were sharing information with her, but it was not “communication” in any meaningful sense of that word.

Not just the early-rounding doctors, but also nurses and other hospital staff frequently interrupted my mom’s sleep, and this proved to be an enormous problem throughout her hospital stay. One of the things my mother needed most was sleep, but she was never undisturbed for more than two hours at a time. This is a common complaint of folks who’ve been in the hospital, and providers acknowledge it’s a problem. My mom’s nurses felt badly about this, and even agreed that it worsened her complications. But it was also clear from the helpless looks on their faces that they couldn’t imagine things any other way. Is the patient at the center of a system that deprives sick people of sleep for days at a time? Is there really no other way to organize a hospital?

Under the revised proposal, insurers may during 2016, and must during 2017 for the 2018 open enrollment period, provide CMS for display on its transparency website a URL that would link to insurer policies or information regarding:

• Out-of-network liability and balance billing (including information on exceptions for out-of-network liability, as for emergency services);
• How enrollees can submit claims in lieu of a provider if their provider fails to submit a bill;
• Grace periods and pending of claims during grace periods (including notice that enrollees could be ultimately liable for pended claims if they do not catch up on their premiums;
• Retroactive claims denials;
• Recoupment of overpayments by enrollees;
• Medical necessity and prior authorization timeframes and enrollee responsibilities;
• Drug exception (for obtaining non-formulary drugs) timeframes and enrollee responsibilities;
• Explanation of benefit (EOB) forms — what they are, when they are sent, and how they should be read and understood;
• Coordination of benefits; and
• Insurer contact information.

The Michigan Association of Community Mental Health Boards has just been awarded a grant of $4.2 million from the Michigan Health Endowment Fund to improve the quality of health for seniors across the state.

Twelve communities throughout the state, including Community Mental Health of Ottawa County (CMHOC), will receive a portion of these funds to implement an evidence based treatment called Senior Reach.

Senior Reach is a nationally accredited program that works with multiple community partners to identify older adults, living in Ottawa County, who may need emotional or physical support. The goal of the program is to keep seniors living independently in their community by providing brief counseling and care management to connect them to resources.

CMHOC will receive $241,000 over the next two years to operate the program.

The U.K. press is reporting promising results for the use of adult stem cells to treat multiple sclerosis (MS). “Remarkable” and “miraculous” are descriptive terms used from some of the doctors who treated these patients, made detailed examinations of their progress, and scientifically validated the observations. The results are part of an FDA-approved, ongoing clinical trial, with collaborations between researchers in the U.S., U.K., Sweden and Brazil. The phase 3 trial started in 2006 originally, and has been adding patients and observing results since then.

The procedure was developed by Dr. Richard Burt of Northwestern University Feinberg School of Medicine, and is a variation of some standard cancer treatments. Multiple Sclerosis is an autoimmune condition, where some of the body’s immune cells have gone rogue and begun to attack the body’s own nervous tissue. This leads to the neurological symptoms seen with MS. Subjects’ adult stem cells were collected from bone marrow or blood, and then they received chemotherapy in order to kill the rogue immune cells. The subject’s adult stem cells were then re­infused into their body and made their home in the bone marrow, subsequently producing fresh immune cells. The process acts as a “rebooting” of the immune system.

In early 2015, the international group reported some of their own initial results with relapsing­-remitting MS subjects that were unexpected. Not only did the adult stem cell reboot stop disease progression, but it actually reversed the neurological disability for many subjects. As their peer­-reviewed publication in JAMA noted, no FDA-­approved therapy has reversed MS symptoms or improved quality of life for these patients. However, the adult stem cell treatment which they administered improved their neurological condition, in some instances putting them into remission from the MS. Dr. Burt noted that this is the only therapy to date that has shown to reverse neurologic deficits in relapsing-­remitting MS.

"Exercise within seven days of injury was associated with nearly half the rate of persistent post-concussive symptoms, or those that last beyond a month," said principal investigator Roger Zemek, MD, FRCPC, who directs the clinical research unit at Children's Hospital of Eastern Ontario and serves as Associate Professor in the departments of pediatrics and Emergency Medicine and Clinical Research Chair in Pediatric Concussion at the University of Ottawa. He said the findings echo some previous, smaller studies calling into question the benefit of prolonged physical rest following an acute concussion, particularly exceeding three days.

"This is the first large-scale study to provide support for the benefits of early exercise on symptom recovery following acute pediatric concussion, shifting away from conservative rest towards more active physical rehabilitation recommendations," Dr. Zemek said. "We definitely don't want patients resuming any activity that could put them at risk of re-injury, like contact sports drills or games, until they are cleared by a doctor," he said, but he added that light aerobic activity like walking, swimming or stationary cycling might emerge as a beneficial recommendation after further study.

More research is urgently needed to confirm the study's findings and to determine the best timing for return-to-play following youth concussions, Dr. Zemek said. In addition to lessening long-term concussion symptoms, he said, re-introducing exercise sooner after injury could help reduce the undesired effects of physical and mental deconditioning.

Someone needs to double-check everything and you can't count on the system to do that.....

Within two weeks of Joyce Oyler’s discharge from the hospital, sores developed in her mouth and throat, and blood began seeping from her nose and bowels.

Her daughter traced the source to the medicine bottles in Oyler’s home in St. Joseph, Mo. One drug that keeps heart patients like Oyler from retaining fluids was missing. In its place was a toxic drug with a similar name but different purpose, primarily to treat cancer and severe arthritis. The label said to take it daily.

“I gathered all her medicine and as soon as I saw that bottle, I knew she couldn’t come back from this,” said Kristin Sigg, the younger of her two children. “There were many layers and mistakes made after she left the hospital. It should have been caught about five different ways.”

Oyler’s death occurred at one of the most dangerous junctures in medical care: when patients leave the hospital. Bad coordination often plagues patients’ transition to the care of home health agencies, as well as to nursing homes and other professionals charged with helping them recuperate, studies show.

“Poor transitional care is a huge, huge issue for everybody, but especially for older people with complex needs,” said Alicia Arbaje, an assistant professor at the Johns Hopkins School of Medicine in Baltimore. “The most risky transition is from hospital to home with the additional need for home care services, and that’s the one we know the least about.”

Medication mistakes like the one in Oyler’s case — which slipped past both her pharmacist and home health nurses, according to court records — are in fact one of the most common complications for discharged patients. The federal government views them as “a major patient safety and public health issue,” and a Kaiser Health News analysis of government records shows such errors are frequently missed by home health agencies.

Irritable bowel syndrome, chronic fatigue syndrome and anorexia may all have a common origin according to researchers.

They speculate that all three disorders may be caused by antibodies to the body's own nerve cells because of a mistake by the immune system following infection.

At the moment, the ultimate cause of these illnesses remains a mystery.

Writing in Medical Hypotheses, Dr Jim Morris from the University Hospitals of Morecambe Bay NHS Trust, Dr Sue Broughton and Dr Quenton Wessels from Lancaster University say current explanations are unsatisfactory.

"Psychological factors might be important, but are unconvincing as the primary or major cause.

"There might, for instance, be an increased incidence of physical and sexual abuse in childhood in those who go on to manifest functional disorders. It is easy to see how this could influence symptoms in adults but it stretches credulity to imagine abuse as the sole and sufficient cause of the functional disorder."

It is already well known that women are more at increased risk of autoimmune disease especially ones in which antibodies to the body's own cells are thought to play a role, like thyroid disease, pernicious anaemia and myasthenia gravis.

The researchers said: "The female to male ratio in these conditions is of the order of 10. The female excess in Irritable Bowel Syndrome, Chronic Fatigue Syndrome and Anorexia Nervosa is equally extreme and therefore this fits with the idea that auto-antibodies to nerve cells could be part of the pathogenesis of these conditions."

The formation of auto-antibodies is found mostly among women and increases with age, which could be why these disorders are more common in midlife. Even with anorexia, which reaches a peak at the age of 30, auto-antibodies have been found in the bodies of patients.

Twenty-seven of 29 patients with an advanced type of leukemia that had proved resistant to multiple other forms of therapy went into remission after their T cells (disease-fighting immune cells) were genetically engineered to fight their cancers.

Background: The immune system -- a complex conglomerate that includes disease-fighting cells and proteins -- is well-known for its remarkable ability to locate, recognize and attack invaders like the common cold. However, the immune system is not always able to eliminate cancer cells when they form. And once malignant tumors develop, they can use a variety of evasion tactics to outwit the immune system.

This experimental therapy is designed to overcome some of these challenges, harnessing the power of the immune system to fight cancers by genetically engineering patients' T cells with a synthetic receptor molecule called a CAR (for chimeric antigen receptor) that empowers the T cells to recognize and kill cancer cells that bear a specific marker, called CD19.

The results of a major pan-European study which gives insight into the quality of continence care services and provisions was launched today at the 6th Global Forum on Incontinence: "Sustainable health and social care: The role of Continence Care in enabling Independent and Dignified living".

The study was conducted by AGE Platform Europe, a European network representing over 40 million older people in Europe, and SCA. Entitled Management for Containment - A review of current continence care provisions, the study was conducted amongst people with incontinence and informal carers in six regions in Germany, Poland, England and Spain. It aimed to provide an understanding of the existing knowledge patients and carers had about the containment products that are available, and to what extent they were involved in the decision about which product type to use.

The main findings of the study were:

• 1 in 4 said the product type offered did not always sufficiently support them when taking part in the activities of daily life
• 43% felt that their product type did not always sufficiently support them when taking part in work activities
• 41% experienced disturbed sleep due to product type
• Nearly 40% felt they had no choice on what product type they could use
• 3 out of 4 needed to pay for additional products themselves

"In today's context of demographic ageing, it is increasingly important to take action to ensure that the support for managing incontinence fully meets the individual's needs and preferences", Anne-Sophie Parent, Secretary General of AGE Platform Europe, said. "There is a lot of room for improving the care of people with incontinence by involving them much more in the decision-making when selecting containment products".

The study highlighted three key factors that could lead to greater user independence and satisfaction in daily management:

• information and knowledge about the different product types
• involvement in selecting the type of product
• tailored funding provisions based on patient profiles and needs