Contributor: Geri Lynn Baumblatt, Executive Director of Patient Engagement

Clinicians live and breathe medicine. And I don’t want them to stop being obsessed with blood counts, better surgical approaches, and new treatments for common infections. But the flipside of this focus is the tendency to forget what it’s like not to know.

Many people live with health conditions for years


Geri Lynn Baumblatt

and still don’t really know what their condition is, whether it might lead to a more serious complication or other long term consequences of their condition. Even when we make an effort to educate ourselves, we really never know if there is a gap in our knowledge.

And when it’s time to make a decision about our health care, those knowledge gaps can contribute to over- and under-treatment. So how do we know if the choice we’re making is the right choice for us? As David Dunning and Errol Morris explain in The Anosognosic’s Dilemma, “the skills you need to produce a right answer are exactly the skills you need to recognize what a right answer is.”

Gaps in Knowledge
When people with diabetes start to show signs of chronic kidney disease (CKD), they’re referred to a nephrologist. But missed appointment rates are high because they often don’t understand why they’re being referred in the first place. After all, who has time to show up for what seems like a random appointment?

And while they may have been told at some point, “diabetes will affect your kidneys”, what does that actually mean to most people? Unlike saying “this condition will affect your eyes and vision”, translating “affect your kidneys” into a message that conveys a future involving kidney disease, dialysis, and transplant often isn’t communicated and definitely isn’t understood. At what point do people get a candid explanation about the trajectory of their condition? Of course if they never see, or delay seeing, a nephrologist, this can also lead to delays in a diagnosis of any kidney disease when fewer treatment options are available, leading to underutilization of care to slow the progression of the disease.

When someone has been living with a progressive condition for a while, it’s easy to assume they and their family understands their prognosis. But a study recently found that 92% of patients in the final stage of CKD, called end stage renal disease (ESRD), thought their health would remain stable or improve over the next 6 months.(1) Is this optimism, or did anyone walk them through the reality of their diagnosis?

I recently sat in a room with six people who have late stage kidney disease (nearing ESRD). All but one was convinced dietary changes were all that was needed to address their condition. Only one of the six understood that at this stage, dialysis and transplant were treatments he needed to consider. This has implications, not just for utilization of kidney transplant, but when families understand more, it may also help them consider kidney donation. And understanding the patient’s condition can also affect the utilization of hospice care later on. Today, only “a minority of dialysis patients use hospice”, even when they withdraw from dialysis.(2)

We Don’t Know What We Don’t Know
When people hear about treatments, it’s easy to make assumptions. For example, when women have uterine fibroids, especially if they hope to get pregnant, a treatment they often gravitate towards is myomectomy. Unlike a hysterectomy, with a myomectomy, the uterus stays in place and the fibroids are removed. Sounds like a home run, right?

Well, first, there’s the assumption the fibroids are the reason a woman can’t get pregnant, which may or may not be the problem, or the only problem. And like any operation, a myomectomy can create scar tissue in the area – so in this case, in the uterus itself. And new scar tissue can actually make it more difficult to get pregnant. So once these knowledge gaps are addressed for a woman who wants to get pregnant, it becomes clear that removing fibroids and leaving the uterus in place does not guarantee she will get to reach that goal. Continue Reading »

Guest Contributor: Lygeia Ricciardi

My Experience
First I got a letter from the hospital, where I’d given birth to a baby girl a few months prior. The letter included a bill for several thousand dollars for services associated with the delivery. “Nah, that doesn’t apply to me,” I thought, “I have health insurance, and I explicitly paid extra for ‘maternity coverage’”. But then there were more bills, followed by menacing phone calls from a collection agency: “If you refuse to pay, we will seize your car, home, or other assets.”

Lygeia Ricciardi

Lygeia Ricciardi

Surely there had been some mistake? I dug into the details of my insurance policy and even had it examined by my employer’s law firm. Aha! In the fine print description of the optional maternity package I had elected via my insurance policy was a stated limit of $3 thousand per pregnancy. Really? So that meant I’d already surpassed the financial limit through ultrasounds before I’d even had the baby! I’d had no idea, and no one alerted me at the time, when I could in theory have navigated the rest of the pregnancy with containing costs in mind. When all was said and done, my husband and I paid $14 thousand out of pocket for a pregnancy and birth we assumed were covered by insurance—and this was nearly a decade ago.

The experience was painful, not just because of the financial hit and the hours my husband and I spent poring over paperwork and stuck in phone tree hell. It was also disheartening to learn first hand what a mess the American health and health insurance industries are, especially from the perspective of a patient. Even with a high level of education and experience working in health policy, I felt lost, threatened, and ultimately wronged. I shudder to think of the challenges faced by people with a lower literacy level, fewer financial resources, and health conditions that may render them weak, incapacitated, and afraid.

My (Lack of) Insurance Coverage
One of the reasons my bills were so high is that, once I’d reached the $3 thousand cap, the hospital considered me uninsured, and its various departments proceeded to bill me directly, in piecemeal fashion, above the negotiated rates they’d arranged. So I received multiple bills from diverse offices for services I couldn’t identify, and had to pay through the nose for them. Based on extrapolation from the findings of a recent survey, The Cost of Having a Baby in the United States, had I been fully covered by insurance, I would have paid about $500 out of pocket for the birth in 2005, rather than $14K . The negotiated rates were never even revealed to me, and there was no central authority to speak with. However, $17 thousand (the $14 thousand I paid plus the $3 thousand my health insurance paid) is definitely above the average total price for a vaginal birth, which was $12,520 five years later in 2010 according to the survey. This negotiated rates system, in my opinion, is unethical in a health context. Is it reasonable to slam sick or injured individuals without insurance with the highest rates—rates it’s awfully hard to negotiate once the service has already been provided?

Further adding insult to injury, I also learned that I would likely have paid significantly less out of pocket under my particular policy had I had a c-section, which is generally about 50% more expensive than a vaginal birth. This is especially galling since I had elected not to use pain medications, hired my own birth coach (or “doula”), and enrolled in several months of prenatal yoga—all measures that contributed to keeping me and the baby healthy and to avoiding interventions such as a c-section. Through my own investments, I saved my health plan money… for which I was ultimately penalized. Continue Reading »

Guest Contributor: Gonzalo Bacigalupe, EdD, MPH – University of Massachusetts Boston, American Family Therapy Academy

Chronic pain, a persistent and recurrent pain not related to cancer pathology is common, about a quarter of us suffer it. Despite its dramatic impact on quality of life, it has a bad reputation. Patients are dissatisfied but health care providers are too. Opioids are often prescribed but just mentioning the word has negative undertones. The fear that patients will misuse them or are some sort of an addict leads to a further burden. Not only the patient has to suffer the physical pain and its emotional and psychological consequences but patients have to also endure a continuous suspicion about medical treatment.

Gonzalo Bacigalupe

Gonzalo Bacigalupe

In research interviews of people living with chronic pain, they are clear about what they think: Doctors “don’t want anything to do with you.” Their deep distrust and dissatisfaction with their physicians is contrary to any call for shared decision-making and open communication between clinicians and patients. Patients perceive clinicians as blaming them, of lying about their experience of pain, and of drug addictive seeking, regardless of the presenting pain even if congenital. It is as if having chronic pain makes patient undeserving of treatment. They “give you the cold shoulder,” a patient told me in a focus group.

Quality of care in the case of chronic pain is, as a result, low. Feeling unheard and consistently not respected by clinicians, patients deepen their sense of isolation, stigma, and may end hiding an addiction that requires a genuine clinical intervention.

What makes a difference? Patients look for affirmation and for clues their clinician is listening and paying attention to their story. Since chronic pain requires a subjective assessment, paying careful attention to the nuances of the patient’s context—family and work particularly—is not optional. Numbers on a scale do not mean much for a patient whose pain is constant, recurrent, and not getting better.

Chronic patients prefer a clinician who is also open to alternative medicine strategies and who is not scared of prescribing them as well as learning from the patient about what of those really makes a difference. Yoga, acupuncture, massages, and other strategies can be very effective for patients. Patients appreciate making them available within the context of clinical care. Integrating mental health and strength-based psychotherapy approaches can also be helpful, countering the usual stigmatization of chronic pain as a hypochondriac behavior or even loaded mental health diagnosis. Continue Reading »

Guest Contributor: Renata Schiavo, PhD, MA – Founding President, Health Equity Initiative

While health disparities continue to undermine the ability of many groups and communities to thrive and connect with socio-economic opportunities, patients from underserved and vulnerable populations remain largely underrepresented when decisions are made or policies are developed about health and related issues. Yet several experiences both in the U.S. and globally (Brownstein et al, 2005: Thiam et al, 2007) demonstrate the effectiveness of community and patient engagement strategies in supporting behavioral adoption and maintenance within clinical settings.

Renata Schiavo, PhD, MA

Renata Schiavo, PhD, MA

Too often, some of the main impediments to successful patient outcomes include “poor communication among health care personnel and patients,” “unique health beliefs and practices,” “distrust of the medical system,” and/or “lack of cross-cultural communication skills, time and resources for providers to manage long-term interventions as it applies to different health areas and settings” (Thiam et al, 2007; Martin et. al, 2005, Brownstein et al, 2005).

So, how can we make sure that the needs and preferences of patients and communities from health disparities settings are included in our thinking and interventions as well as adequately address health literacy levels and existing barriers to improved health outcomes and disease prevention? How do we create meaningful connections between clinical settings and underserved communities? The answer lies in participatory planning. By inviting everyone to the table (including patients, clinicians, community-based organizations, government agencies, hospitals, local universities and business, and many others) we are more likely to develop patient- and community-specific strategies.

Under participatory planning models, clinicians may learn from patients and communities about cultural characteristics, priorities, and needs that would enhance their ability to empathize and become effective communicators. They may also learn how to connect patients with community resources, so that they are able to effectively address barriers to disease prevention and treatment adherence. For example, how can we expect people who live in a food desert and may work three different jobs to support themselves and their families to look for and cook healthy food on a regular basis if we don’t remove key obstacles to recommended behaviors? Yet the solution to many of these issues is not only dependent on adequate policies (federal, local, or institutional) but sometimes already exist with the community itself, because of the ingenuity of some of its members. Continue Reading »

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 »


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