Patients and caregivers writing on KevinMD about illness and the health care system from the other side of the exam table: navigating care, the doctor-patient relationship, being heard, cost, and what patients want physicians to understand. Physicians who have become patients write here too. For the record of what pain patients and physicians have said to each other about opioids since 2007, with patient authors cited at the same weight as physicians, see Opioids: what physicians and pain patients say, in their own words. For what patients pay and who is left out when physicians leave insurance, see Direct primary care: what physicians say, in their own words. For what patients, families, and physicians have said about dying, hospice, and the decisions families face, see End of life: what physicians say, in their own words. For what physicians and family caregivers have said about growing old, dementia, nursing homes, and caring for aging parents, see Aging and dementia: what physicians say, in their own words.
Medicine is about balancing risk and benefit. Certainly, as healthcare providers, we attempt to provide the best care for our patients based on available evidence. Physicians often are seen as shepherds, helping to guide patients through disease and therapy. As I have mentioned in previous blogs, ultimately medicine will be personalized and tailored to one’s particular genetic make-up. However, the need for a clear discussion of treatment options …
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We must change how we discuss procedures with our patients
The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services. But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service. Two phrases commonly used to describe us …
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Don’t call me a health care consumer
I empathize with people who don’t take an active role in their health care decisions. There are real barriers to any of us really getting engaged: limited information about price and quality, a perpetuated culture of “doctor knows best,” and a daunting and confusing set of rules about coverage. Who wants to think about it?
There are only so many minutes in the day or neurons in the brain. So, we …
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Patients: Play the role of a consumer who has choices
When I recently read the phrase, “I’m embarrassed to be sick,” it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling: this vague sense of social unease even with close friends, a reluctance to be seen or even talk to people–especially those that knew me before I became chronically ill.
At the age of 55, after a lifetime of seemingly …
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In today’s society, chronic illness is viewed as a personal failing
A few weeks ago I had the distinct privilege to attend TEDMED as a Front Line Scholar. TEDMED isn’t your usual medical conference; artists share the stage with scientists and your notions of what healthcare could be are shifted.
While the talks I attended were often inspiring and eye-opening, the interaction with fellow attendees was by far the most enriching aspect of the …
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Why the conversations that start in TEDMED need to continue
I was listening to CBS This Morning recently as they were interviewing Alan Alda. He was discussing his acting career and being the host of Scientific American’s Frontiers (airs on PBS stations). Alan Alda relayed a personal story of his, having an intestinal blockage while he was filming an episode in Chile.
As he relayed this incident, he spoke of the physician who told him that he was going to remove the …
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4 tips to better communicate with patients
Over the past decade, patient-centered care has become a mantra for high-quality health care. Policymakers, researchers, physician-leaders, and patients have all cited the need for care to be tailored to patients’ unique needs and preferences. And there is solid evidence that patient-centered care can help improve care quality and reduce costs. However, in the rush to become more patient-centered, the health care system has misplaced its focus.
Current approaches to …
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Patient-centered care requires learning from the service industries
Since 1992, I have advocated for all of us to have the information, support and guidance we need to act to improve our health and get the most from our health care. I believe – and there is considerable evidence to back me up – that we do better when we participate in our care to the extent we are able.
As someone who has been diagnosed with several different types …
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Twitter for the engaged patient: A curated stream of new evidence
Growing up, I am sure you heard many “why” questions, such as: “Why is your room so messy?” and “Why didn’t you eat your vegetables?” I am quite certain those questions made you feel defensive. Patients also feel defensive when we ask them ”why” questions. In other words, “why” questions set people off. These types of questions can turn a usually-friendly patient into an angry nightmare.
Here is an example. Your …
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Stop asking why and strengthen your relationships with patients
An important study in the Journal of the American Medical Association finds that misdiagnosis is more common than you might think. According to the study, almost 40% of patients who unexpectedly returned after an initial primary care visit had been misdiagnosed. Almost 80% of the misdiagnoses were tied to problems in doctor-patient communication, and more than half of those problems had to do with things that were missed in the …
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Misdiagnosis is more common than you think
There’s this weird feeling I get when I hear bad news, or even not that bad news, or even the possibility of bad news: a tingling that spreads across my forehead, down my face, into my jaw, and then to my chest, where it settles like a…no, not a lump…a void. I get the feeling every time I go for my annual mammogram or any other medical test, I wonder …
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How would you react to a cancer diagnosis?
Hospitals can save you, but they can also harm you. So how can you stay safe in hospitals? Follow these 12 life-saving tips:
1. Never go alone. Always bring someone else—a trusted family member or friend—with you. That person will be your primary advocate, and can serve as an extra set of eyes and ears to help make sure you are safe. (This tip applies to routine doctors’ appointments too; always …
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12 tips to stay safe in hospitals
I’ve been going about this all wrong.
It’s not my dumping of the payment system so I can focus on care over codes, my use of technology to connect better with patients, or my vision of the “collaborative record” that is wrong. It’s the fact that I am doing this without my most important resource: my patients.
I realized this while driving in to work this past week. My first patient was …
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Building a true collaborative health record: Ask your patients
As of late, patient engagement has been laudably deemed a “miracle drug,” a silver bullet slicing through the tangled morass that is our American healthcare system. The comparison may be hyperbole, but the potential impact of patient engagement does have merit. With engaged patients, medical problems can be diagnosed swiftly and treated with higher success rates. Illness can be prevented and emergency department usage can be abated. Care can be …
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Patient engagement: What doctors can learn from teachers
Let’s explore one of the most well-studied health behavior theories – the health belief model (HBM).
The HBM states that our health choices are a direct consequence of our perceived susceptibility to a disease, our perceived severity of a disease, and the perceived barriers that keep us from adopting better habits.
Perceived susceptibility, perceived severity, and perceived barriers are three of the main constructs from the HBM. The word “perceived” is very …
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Because I said so: Why that doesn’t work with patients
The dictionary defines humanism as “a system of thought that centers on humans and their values, capacities, and worth.” No sector of the economy comprehends this definition better than a small business. In a sea of competition, the small business whose primary focus strays from its customer’s best interests will surely sink. Those with business experience will undoubtedly attest that, whether in a hair salon or restaurant, a happy customer …
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The largest barrier to achieving humanistic nirvana in medical care
I hate saying I told you so. But “patient engagement is a physician-patient communications challenge and not an HIT (health information technology) challenge.”
Just take a look at the Mayo Clinic’s patient portal experience which was discussed at a HIMSS 2013.
The headline: “Mayo Clinic struggles to meet stage 2 meaningful use thresholds for engaging patients.”
Always innovating, the Mayo Clinic some three years ago introduced a web-based portal to share information with …
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If you build a patient portal, why won’t they come?
Being a clinical student is not a walk in the park. When we get together for “Reflections on Clerkship” days every two months in our small groups, students let the floodgates open about the hardships they have been facing on rotations. I am no exception. Transitioning to a strict schedule in the hierarchical world of academic medicine has been no small feat. In fact I was planning earlier this morning …
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The patient experience can be dehumanizing
When I entered the exam room I found my patient, a woman in her 80s who’d come in for a routine visit, holding a photograph. “I need to show you something,” she said. Some patients bring me photos at every visit–usually their kids’ or grandkids’ annual school pictures, or smartphone shots of a wedding or christening–but she never had before. I wondered what it might be.
She laid the photo on …
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When photographs transform relationships with patients
