Mulvihill

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

siegel

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 »

Guest Contributor: Jan Berger

Jan Berger

Jan Berger

In 1985 C. Everett Koop made the statement “ Medicines don’t work with patients that don’t take them”. Interesting 1985 was the year that I began practicing medicine.

The first 15 years of my life I cared for patients and often had to prescribe medications, the last 15 years of my life I have focused on health care communication challenges including getting patients to take medications as prescribed. The first question that you may ask is what does communication have with to do with adherence and underutilization?

What I have learned is that communications and what we call “adherence” are closely linked. As physicians we spent years learning how to diagnose and treat our patients. What we didn’t learn was how to discuss the treatments we prescribed.

During my training I had a wonderful mentor by the name of Richard Gatson. He taught me that the greatest tool that we had as physicians was communication and trust with our patients. Little did I realize that his teachings would be the basis for the rest of my career? What I did not understand was that the conversation between the patient, the physician and others such as caregivers and other healthcare professionals regarding the medicines.

I would give the patient the medications, explain what it was for and go through what I thought was the most important side effects. I assumed this was enough to have the patient take their medicines. What do they say about people that make assumptions? What I did not do was to have an interactive conversation with patient. I did not ask what the patient thought about taking the medicines, what was important to them and what the potential barriers to them taking the medicines may be. Continue Reading »

Guest Contributor: Beccah Rothschild – Senior Outreach Leader on Health Impact, Consumer Reports

The itching and rash on my back and shoulder blades had become so intense that I wanted to rip my skin off. Sleep was near impossible. I was constantly stretching my arms behind me far as they could go, hoping for any relief that just a little bit of scratching might provide.

Beccah Rothschild

Beccah Rothschild

I’m a swimmer who is lucky enough to live in California, where I can swim outdoors year-round. I figured that the itching was a reaction to my frequent sun exposure, but this had never happened to me before, so finally, after much delay and thinking that the itching would just go away if I tried one more cream or one more ointment, I made an appointment with my doctor. After various exams and a blood draw, we both agreed with my initial hypothesis: I had likely developed a mild sun sensitivity. But, “just to be safe,” my doctor suggested additional testing. “Why?” I asked. “Would the result of more testing lead us down a different treatment path? What would happen if I didn’t do anything?”

I asked these questions because I didn’t want to waste my time – or money – on testing that I didn’t need and that wasn’t going to change my course of treatment. It also probably didn’t hurt that I work on the Choosing Wisely® campaign at Consumer Reports and therefore spend my days thinking and talking about medical overuse.

Choosing Wisely, a national campaign led by the ABIM Foundation and funded by the Robert Wood Johnson Foundation, is aimed at sparking conversation between doctors and patients about the overuse of medical testing, treatments and procedures. This can mean overuse in the areas of prescription drugs, such as antibiotics for a runny nose or sinus infection. It can also mean overuse in the area of imaging tests, like an unneeded CT scan for a headache or an MRI for most low-back pain. And it can also mean overuse in terms of procedures, like a C-section for a healthy pregnant woman, just because it’s more convenient. Continue Reading »

Guest Contributor: Casey Quinlan

There’s an old joke that has a guy asking a passer-by on the street how to get to Carnegie Hall. The passer-by answers, “Practice.”

Casey Quinlan

Casey Quinlan

That’s a core truth for most of life. Learning how to ride a bike, learning how to do math, learning how to read a map – all take some basic instruction, and then some dedicated practice. Learning medicine requires a big wallop of instruction, followed by some very dedicated practice. The best docs admit the description of the profession of medicine as a “practice” fulfills both meanings of the word – as a noun, the repeated exercise of a skill; and as a verb, to repeatedly perform a skill to maintain proficiency.

The same is true for those of us on the patient side of healthcare. We learn how our bodies work, and how we individually respond to different things, from food allergies to types of exercise to physical environments. When we interact with the healthcare system, we need to bring our own knowledge, and use that knowledge to be an active part of our healthcare team.

That’s Key #1: Bring your brain

The level of knowledge that you, the patient, bring to a medical encounter doesn’t have to be MD-level. It does have to be fully informed about YOU: your symptoms, your history, your goals, your philosophy of life. Health literacy does require that you work to avoid being what I call a “meat puppet” – in other words, showing up with nothing more than, “hey, doc, I got this pain … fix me!” That would pretty much guarantee a not-so-great outcome: over-treatment, under-treatment, or, worst of all, the wrong treatment.

You don’t have to work through the tutorials on the Brookings/Khan Academy partnership site built to educate both clinicians and the general public about how healthcare works (although you could – it’s great!). What you do have to do is be aware of what you body’s up to, and track any symptoms that show up. Form a partnership with your primary care team. Make a point of thinking through how you’d manage a health challenge like a diagnosis of cancer or Parkinson’s or diabetes. Write down how you’d like to be treated if you wind up unable to direct your own care, and make sure you designate someone to speak for you when you can’t speak for yourself.

The partnership approach will create a framework for your care team to know you well, to know your physical and mental health, and to work with you to create the right treatment protocol for whatever health issues arise for you. If and when a diagnosis does present itself, for anything from cancer to diabetes to arthritis, you can do some of your own research on Medscape, the Mayo Clinic, or TheNNT.com, and share what you learn with your clinical team.

There’s Key #2: Be a partner

So you’re using your brain, and you’ve formed a partnership with your care team.

What’s Key #3? Actively manage your care.

That involves keeping your knowledge base sharp (Key #1), and keeping your teamwork sharp (Key #2). There’s a bit of secret sauce in this step, because you’ll be teaching your clinical team in Key #3, as well as learning from and working with them. Continue Reading »

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