Guest Contributor: Elizabeth Rankin, BScN – Society for Participatory Medicine

Elizabeth Rankin

Elizabeth Rankin

It isn’t an easy task taking medications that cause problems. I know first hand just how difficult it is to get doctors to listen to the patient. What often underlies patient compliance and adherence issues is drug intolerance that goes unrecognized.

Patients who are told they require a drug need to be carefully monitored. I had consultations with several doctors over a three-year period, including the physician who continued to prescribe a class of drug known as statin drugs. Not one connected my symptoms and diagnosed problems as iatrogenic or drug induced problems. This posed a variety of issues for me including continuing to live with the long-term side effects from my drug. I had several tests over this period, including an unneeded angiogram six weeks after my stent because I had chest pain even though my Troponin [heart enzyme tests] were negative, that is considered normal. I also had two other hospital admissions, two by ambulance, and one that was directly from my doctor’s office, following a stress test resulting in a Transient Global Amnesia Attack, known as a TGA!

Patients who are taking statin drugs, also known as cholesterol lowering drugs, might recognize they have the most commonly reported side effects. Sore muscles are a common side effect of statin drugs and sometimes, in a few patients, it can lead to the worst end-case diagnosed problem called Rhabomyolysis, which can be fatal. What patients and many doctors don’t recognize is that all the muscles in the body are affected while taking statin drugs. This is important to know because our brain, heart, lungs, liver, pancreas throat & stomach are major organs that are affected by statins and can play havoc with patients who experience intolerance to these drugs.

I’ll explain why I had and continue to have “chest pain” related problems. The patient who is affected by taking a statin drug can present with many types of problems. I had different kinds of symptoms that ended up causing different diagnosed problems. The one set of symptoms I still have post statin drug use, and will always have, is that which resembles angina or heart related pain. This occurs because the statin drug is known to weaken the muscular ring that connects the oesophagus to the stomach. In some patients who are affected by this class of drug, it explains why the contents of the stomach spurt into the throat creating not only pain but also a host of other related symptoms, including choking & coughing. When this causal relationship, or drug-induced problem occurs the patient is likely to get a diagnosis of GERD, more commonly known as ‘”reflux”, without first recognizing it is the drug that is the basis for their problem. Other patients can have other problems develop such as Heart Failure or breathing related issues, regarded as pulmonary or lung issues. Diabetes is another rising concern among statin users along with memory and cognitive related problems so it behoves patients to ask more questions while on any drug.

Taking any drug long enough is likely to lead to a variety of side effects and something as simple as taking a lower dose can be the answer for some. When patients are not carefully monitored and they develop problems or conditions affecting their health that go unrecognized it is a patient safety issue.
Continue Reading »

Guest Contributor: Paul Barr – Assistant Professor, Dartmouth College

“To the giver, the gift is quickly replaced by the body. There is no permanent loss. To the receiver, the gift may be everything: life itself.”
(Richard Titmuss. The Gift Relationship)

Would the FDA approve transfusion if it entered the market today?

Paul Barr

Paul Barr

Blood transfusion is the most commonly performed medical procedure in the U.S. with recent figures reporting an estimated 5 million transfusion recipients (Whitaker & Hinkins, 2011). Despite transfusion’s common place in medical practice, current evidence supporting its effectiveness is limited; evidence to support a reduction in mortality and morbidity in transfusion recipients is not well documented (Pape et al, 2009). While an individual with anemia feels the benefit of a blood transfusion almost immediately, there are both short and long-term risks of transfusion. Indeed, a paradox exists between anemia and transfusion, as both have been associated with organ injury and increased morbidity and mortality as extensively described by Shander et al (2011)’s excellent and extensive article. In addition, evidence among patients who commonly refuse blood, such as Jehovah’s Witnesses, and in trials with restrictive transfusion policies, have found outcomes for such patients to be comparable to those of transfused patients.

Overuse of blood
The rate of blood (red cell units) transfused in the 48.8/1,000 people, much higher than in Canada or Europe (Hoffman, 2011). In the U.S., as in other countries, the donor pool that provides blood is shrinking and the number of donations is on a downward trend. Only 4.6% of the US population aged 15 – 64 donated blood according to the most recent health and Human Services (HHS) report (Whitaker & Hinkins, 2011). However, decreases in demand, due mainly to better blood management, have enabled us to maintain an adequate supply. Despite this, 10.3% of hospitals in the U.S. have reported at least one day in which non-surgical blood could not be provided.

With the blood supply in such a delicate balance it is important that blood is transfused appropriately. Yet, decisions to transfuse that cannot be justified by guidelines range from 4% to 66% of all cases (Hasley et al 1994; Hebert et al, 1997). In addition, when the decision to transfuse does adhere to guidelines, recipients may receive more blood than they actually need – they are over-transfused. In a previous study, we found over-transfusion occurred in 19% of blood recipients in Northern Ireland (Barr et al, 2011a), with others reporting rates ranging from 24% to 75%. Mixed evidence supporting guidelines may be a significant contributor to such wide variations in appropriate use of blood. Continue Reading »

Guest Contributor: Anne Sullivan RN, BSN, Cleveland Clinic

“I don’t want to get addicted to pain medications.” “Don’t give me anything too strong.” “I will only take pain medication when I absolutely have to.” I have heard these concerns from patients way too often in my nursing career.

Anne Sullivan

Anne Sullivan

Particularly in the geriatric population, the fear of becoming addicted to opioids is prevalent. According to Dr. Herr, Nurse Leader’s Seminal Research Addresses Pain Management for Older People, “Many older adults have other deeply rooted fears about pain that can prevent them from getting relief.” The fear of becoming addicted and refusing proper pain relief will ultimately lead to increased rehabilitation time, increased chances of further complications like blood clots and pneumonia, increased length of stay, and a lot of frustration for the patient and family.

Overall, the patient experience will be compromised. Patients and family members are the core of the health care team. Educating the core team members on the benefits of pain medication, needs to be done consistently.

For example, say a 72-year-old female, “Edith,” is admitted to the hospital after a fall. She had been relatively healthy before the fall. But it caused fractured ribs and a reddened area on her tailbone that turns white when pressed on.

The nurse enters with Edith’s morning medications.
Nurse: Are you in any pain?
Edith: Yes dear, but, I don’t want to get addicted to those pain meds.
Nurse: You won’t become addicted. This medication will help you.
Edith: No, thanks.

Noon rolls around during the nurse’s busy shift. She goes to check on Edith, to see how she’s doing.

Nurse: How are you feeling? I notice your breathing is a little shallow.
Edith: Yes, it hurts to take a deep breath.
Nurse: Would you like some pain medication?
Edith: No, thank you, I am only going to take those things if I really need them.

As the nurse begins to educate on the benefits of taking opioids, her phone starts to ring; the patient down the hall blood has arrived and needs to be started STAT. So their time is cut short. Continue Reading »


Karen Mulvihill

Guest Contributor: Karen Mulvihill DNP, APRN, ACHPN, FNP,ACHPN – Director of Palliative Care Services, Danbury Hospital

Palliative care has a bad rap and is often underutilized because of the lack of understanding of what it is. Patients panic when they hear “palliative care” and think it means they are dying. But palliative isn’t only for people who are terminally ill, and it is not the same as hospice care. This is a daily discussion I have with patients and families dealing with a chronic life-limiting illness. The first discussion usually centers around why palliative care is not hospice. Palliative care should be part of the treatment plan from the time of diagnosis of an illness through end of life and hospice care. That may be years in some cases!

Palliative care is for ANY patient with a chronic illness who is experiencing a decreased quality of life because of symptoms related to their illness or treatment, like renal dialysis, oxygen therapy or chemotherapy. And hospice care is only for patients who are no longer receiving curative treatments for their illnesses, and want to focus ONLY on quality of life. Hospice patients have a prognosis of six months or less, if the illness were to follow the usual course. Hospice is a type of palliative care. I describe as an umbrella. Palliative care is the umbrella, where we are focusing on symptom control to get you through treatments, advance care planning, and quality of life. Hospice and end-of-life care fall under the umbrella when the focus of care changes. Bereavement care is also under that umbrella, for family support after a death.

Palliative Care

Unfortunately, because of this misunderstanding, many patients with chronic illnesses never even know palliative care is an appropriate option. Many people think it is just for cancer patients, but that is not the case. Patients with heart disease, lung disease, neurological diseases and dementia are also appropriate for palliative care. Chronic illness can cause many symptoms and have a negative impact on quality of life. The symptoms may include pain, fatigue, anxiety, or nausea to name a few. The symptom could be I am too tired to play with grandchildren, or golf or go on a family trip. Palliative care is there to look at the patients and family as whole and see how we can help improve everyone’s quality of life. Continue Reading »

Guest Contributor: Corey A. Siegel, MD, MS – Director,  Inflammatory Bowel Disease (IBD) Center, Dartmouth-Hitchcock Medical Center


Corey Siegel

We always want to get it right the first time when treating patients, but the truth is this is difficult. When there is uncertainty of disease course and prognosis, multiple treatment options, and variable responses to therapy this becomes even more challenging. Our typical strategy to making it “just right” isn’t too different from Goldilocks. We have mild treatments (too cold), and aggressive treatments (too hot), and even in the face of ambiguity, we need to start somewhere. This “trial and error” medicine can work, but we need to do better when the stakes are high, disease pace is rapid, and cost-effectiveness a major factor.

With chronic disease this is particularly hard. As a provider, when I meet a patient late in the course of their disease it is easy to tell if they have had a mild course, or more complicated disease by learning what has occurred over the past 10 years. However, when meeting a patient soon after diagnosis – the course is uncertain, patients are not yet educated about the treatment options, and choosing therapy with which both provider and patient are comfortable isn’t easy. We could just quickly cycle through the options, like Goldilocks, but when the implications of using the wrong drug include rapid progression of their illness or significant potential treatment side effects, this is far from optimal.

For example, I am a gastroenterologist and my practice is dedicated to the care of people with Crohn’s disease and ulcerative colitis. For Crohn’s disease in particular, getting the first therapy right is critical. Crohn’s is a chronic inflammatory bowel disease that can cause complications including bowel narrowing (strictures) and rupture (perforation) of the intestine – both leading to surgery, sometimes even multiple surgeries. In people with the most aggressive disease – an ostomy (bag on the abdomen to collect stool) may be needed. These complications can occur within the first months after diagnosis or many years later.

Fortunately, many people with Crohn’s will never get a complication, and there is a broad range of disease severity. In fact, I am part of a research group called BRIDGe that set out to build an algorithm for how to manage patients with Crohn’s disease. Even with trying to simplify the project, we identified 134 different “types” of Crohn’s patients we see in the office. Since one size does not fit all, we realized that we can’t give a treatment guideline that fits all people with one disease, but that we need to treat them as individuals and make a personalized treatment plan. Guidelines are a nice starting point – but typically miss the nuances that are so important in getting it right for individuals.

Since tools to develop individualized treatment plans are not available most of the time, we are often left with making an educated guess. Providers often consider if they would rather be wrong under-treating or over-treating a disease process. Under-treatment typically avoids side effects and cost, but at the expense of a rapidly progressive disease causing more problems before we can get it under control – or sometime losing control completely. Over-treatment usually has a higher chance of working (stronger therapy), but at the literal and figurative cost of treatment, which may even include life-threatening side effects. Engaging our patients in this decision making progress is critical, but exposing our uncertainty of the right thing to do may only make these big decisions more overwhelming. Continue Reading »

Guest Contributor: Bruce L. Lambert, Ph.D. – Professor, Department of Communication Studies; Director, Center for Communication and Health, Northwestern University

By now it is well known that problems with low health literacy are widespread. When we talk about health literacy, we are not just talking about people’s ability to read words on a page, but rather about their ability to successfully navigate and manage all of the interactions, documents, interfaces, media and information that they encounter as they try to stay well or seek treatment for health problems. Even for well-educated people who have lots of resources (i.e., time and money), the increasing complexity and fragmentation of the healthcare system make it difficult to make good decisions about their health.

Bruce Lambert

Bruce Lambert

Very little in everyday life prepares us to be able to make the kinds of inferences and decisions which we are routinely asked to make in healthcare. Unlike other areas of our lives, where we might be able to rely on common sense to guide us through uncertainty or to help us make sound judgments even with incomplete or ambiguous information, the specialized and rapidly changing content of healthcare information often requires us to master new concepts and vocabulary, and to do things that common sense is naturally quite bad at, like reason about probabilities, or discern the difference between a vaginal and a rectal suppository.

The consequences of low health literacy, especially in the context of so much fragmentation and complexity, should be a concern to us all. When we can’t understand or navigate the information and interactions we encounter in healthcare systems, we don’t understand how to prevent common illnesses. Even after getting diagnosed, we don’t know what’s wrong with us. We don’t understand how to use the increasingly complex drugs and devices that health professionals ask us to use. And if we are lucky enough to understand how to use a drug or a device, we often don’t know how it works, what its comparative risks and benefits are, or what to expect in terms of its side effects or effectiveness.

One of the most significant movements in healthcare today is the movement to make care more patient centered. By this, people generally mean that care should be tailored to the needs, beliefs and preferences of individual patients. But complexity, fragmentation, and low health literacy severely undermine efforts to make care more patient centered. When patients don’t understand their diagnosis, their prognosis or their treatment plan, when they don’t understand the balance between risks and benefits, and when they don’t know how to use diagnostic devices, patient portals and other new technologies, care is, by definition, not patient centered. Remember, to be patient centered means to tailor care to a patient’s needs, beliefs and preferences. Clearly the most fundamental need, after providing emergent or life-saving care, is for patients to understand what’s happening to them and what they need to do to maximize the benefits and minimize the risks of care. Continue Reading »

Contributor: Emily Azari – Health Writer, Emmi Solutions

It’s not exactly a newsflash to say our medical system can be unfriendly to patients. But when you think about how the system looks to someone struggling with health literacy, the problems become even more glaring. As a result, people with low health literacy underuse preventive services and have higher rates of emergency use and hospitalizations.

Consider the steps involved with something as simple as a routine check-up.

To start, many of us only go in for preventive care if we have health insurance. You’ve probably been through that fun drill of choosing a plan — trying to price out options, decipher deductibles, understand which medications will be covered, and so on. Of course, once the inevitable frustration sets in, you postpone the decision until your HR department gives the 24 hour warning, at which point you just pick the plan you had last year.

Emily Azari

Emily Azari

Brutal as it is for you, imagine that process for someone with low health literacy. In fact, let’s give him a name: Richard. Charts, calculations, and utterly foreign insurance lingo make the whole thing practically impossible for him to navigate. And that’s if he’s fortunate enough to afford a decent plan. After all, low health literacy is linked with less education and lower incomes.

Speaking of access to health insurance, let’s consider access to care. Going to the doctor often means taking time off work — a nuisance, at the very least, for many of us. Richard has the same issue, plus he needs a loved one to accompany him to help with paperwork and communication. That means two people now need to free up their schedules.

Cost and logistics aside, we need a spark of motivation to actually schedule the appointment. Folks with low health literacy have trouble understanding their health, and might not always realize when a preventive visit is in order. So maybe Richard’s cholesterol or A1C numbers aren’t meaningful or motivating to him, or maybe he just doesn’t think there’s anything he can do about that nagging pain in his knee, anyway.

But once the appointment’s made, here we are in the waiting room. Many of us are nervous as we wait, feeling a little foolish as we fill out those forms. (Which is my group number, and which is my policy number, again?) Richard, meanwhile, is outright flummoxed by his paperwork, yet the front desk staff isn’t exactly expressing compassion. Fortunately, his daughter is there to help out, but even she isn’t confident about everything. Continue Reading »


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