CT Center for Patient Safety Newsletter
September 2010 

My mother turned 99 in May.  She has enjoyed extraordinary health but recently has begun to very slowly let go of a life she thoroughly enjoyed.  She has a living will, a do not resuscitate and three daughters who make certain that what she wanted is what she is getting.  But it has made me think a lot about end of life issues.  It has reinforced my strong belief that every patient must be able to make informed decisions about his or her healthcare.
Last week the New England Journal of Medicine reported that among 151 patients with newly diagnosed metastatic lung cancer, those who received palliative care, which is care focused on symptons, along with standard cancer therapy had a better quality of life, experienced less depression, were less likely to receive aggressive end of life care and lived nearly three months longer.
The patient so often seems to get caught in what author Rosemary Gibson calls the Treatment Trap - her latest book.  As medicine becomes more and more sophisticated, treatment options grow, the patient gets lost - relying on the information of a specialist who may well be forging ahead without considering the individual and his/her family and their needs and beliefs.
Atul Gawande, the ever thoughtful and articulate doctor and writer talks about how difficult it is to have these discussions with families and patients.  All of us reading this do work that is often very hard - doctors seem to think that providing full information is too hard - they are not trained to do so.  Recently a physician talked to me about a patient who was on eighteen different medications. The doctor was very angry at the patient!  When I suggested that the doctors prescribing all of those drugs had a very big role in this, she said that the patient had probably requested all those different drugs.
 The responsibility lies with the doctor - fully informing the patient and family about risks, benefits and outcomes is part of the job.  Quality of life, in many patients' minds, trumps aggressive medical intervention and now the latest study suggests that palliative care is more effective.

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Dear Member,
I am always stunned by the lack of accountability.  Over the summer I have had an opportunity to meet with individuals and their families who have encountered an uncaring and often dangerous system of healthcare delivery.  What stands out in my mind is the daughter who told me that she wished her father had known he was dying of cancer and that he was not just crazy.  He was placed in a psychiatric hospital and his advanced cancer went undiagnosed.
Our work continues - real reform of our system seems far off.  Thank you for calling, for speaking up and for making sure the CT Center for Patient Safety stays focused on its mission - working to improve the quality of health care. 
As reported in the New York Times: very powerful antipsychotic drugs being used to treat very young childrenThe reporter failed to look into physician ties to pharmaceutical companies. 
 - At 18 months, Kyle Warren started taking a daily antipsychotic drug on the orders of a pediatrician trying to quell the boy's severe tantrums.  Thus began a troubled toddler's journey from one doctor to another, from one diagnosis to another, involving even more drugs -  autism, bipolar disorder, hyperactivity, insomnia, oppositional defiant disorder. The boy's daily pill regimen multiplied: the antipsychotic Risperdal, the antidepressant Prozac, two sleeping medicines and one for attention-deficit disorder. All by the time he was 3.
He was sedated, drooling and overweight from the side effects of the medicine. Although his mother, Brandy Warren, had been at her "wit's end" when she resorted to the drug treatment, she began to worry about Kyle's altered personality. "All I had was a medicated little boy," Warren said. "I didn't have my son. It's like, you'd look into his eyes and you would just see blankness." Today, 6-year-old Kyle is in his fourth week of first grade, scoring high marks on his first tests. He is rambunctious and much thinner. Weaned off the drugs through a program affiliated with Tulane University that is aimed at helping low-income families whose children have mental health problems, Kyle now laughs easily. Kyle's new doctors point to his remarkable progress - and a more common diagnosis of attention-deficit hyperactivity disorder - as proof that he should have never been prescribed such powerful drugs in the first place.
Kyle now takes one drug, Vyvanse, for his attention deficit. His mother shared his medical records to help document a trend that some psychiatric experts say they are finding increasingly worrisome: ready prescription-writing by doctors of more potent drugs to treat extremely young children whose conditions rarely require such measures.
More than 500,000 children and adolescents in America are now taking antipsychotic drugs. Their use is growing not only among teenagers, when schizophrenia is believed to emerge, but also among tens of thousands of preschoolers. "There are too many children getting on too many of these drugs too soon," Dr. Mark Olfson, a professor of clinical psychiatry, said. Such radical treatments are indeed needed, some doctors and experts say, to help young children with severe problems stay safe and in school or day care. In 2006, the F.D.A. did approve treating children as young as 5 with Risperdal if they had autistic disorder, self-injury tendencies, tantrums or severe mood swings. Two other drugs - Seroquel and Abilify - are permitted for youths 10 or older with bipolar disorder.
But many doctors say prescribing them for younger and younger children may pose risks to development of both their fast-growing brains and their bodies. Doctors can legally prescribe them for off-label use, even though research has not shown them to be safe or effective for children. Boys are far more likely to be medicated than girls, and foster care children also seem to be medicated more often.
Dr. Ben Vitiello, chief of child and adolescent treatment at the National Institute of Mental Health, says conditions in young children are extremely difficult to diagnose properly because of their emotional variability.
"This is a recent phenomenon, in large part driven by the misperception
that these agents are safe and well tolerated," he said.
In the last few years, doctors' concerns have led some states, like Florida and California, to put in place restrictions on doctors who want to prescribe antipsychotics for young children, especially for those on Medicaid. Some states now report prescriptions are declining
as a result. The F.D.A. has also strengthened warnings about using some of these drugs in treating children. DUFF WILSON 
Pennsylvania cost containment makes a business case for eliminating infections - patient suffering has not been enough! 
CDC estimates that as much as $31.5 billion of the $45 billion annual direct cost of HAIs could be saved with an effective infection program, which would significantly reduce the economic burden. Reimbursement is currently affected by the determination that some infections can reasonably be prevented through application of evidence-based practices. The evidence is compelling that taking action to invest in an effective infection control program can have a profound positive impact on the organization's bottom line and reputation, prevent the catastrophic effects of HAI, and improve patient safety and satisfaction. Hospital success stories highlight the opportunities for all organizations to make zero HAIs a target, and many protocols can be implemented without much of an investment. Application of practical guidelines to develop an infection prevention and control business case will assist hospital IPs and epidemiologists to justify and expand much-needed programs. The true investment is the organizational commitment from healthcare leaders and clinicians to engage in a fresh approach to providing patient care in a culture of safety and to set the goal number of HAIs at zero. This requires acknowledging the high-risk nature of the organization's activities, as well as investing in infection prevention programs, allocating resources needed for optimal programs, and making infection prevention an institution-wide priority.