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.
I’m impressed by how much we struggle with seemingly simple health decisions when faced with sorting through too much information.
Buying sunscreen: It’s a simple task, right? Most of us do it every year about this time. And among actions we can take to reduce our risk of cancer in general and skin cancer specifically, this choice is fairly important.
So my colleague was surprised to hear this snippet of conversation as she contemplated …
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Authorities overestimate patients’ health literacy
According to the recent Wall Street Journal article patients are encouraged to engage in care, keep track of their medical data, seek preventive care, and to manage their conditions. Studies show that if patients are actively involved in care and partner with providers, that they experience better health outcomes and lower costs.
But for patients to be active participants in care they must acquire knowledge about their diagnoses and treatment plans, …
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Patients need education about their role in care
If only our lives were more predictable and certain, we’d feel a greater sense of security and safety. Yet, much of what happens to us is beyond our ability to control. This is true whether we live in a third-world country or in the most advanced scientific and technological environment. It’s also true whether we’re struggling to make ends meet or living in the lap of luxury.
No one is immune …
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The uncertainty that the chronically ill face
What if healthy pregnancies were treated like special needs pregnancies?
Mr. and Mrs. Johnson, good afternoon. I’m Doctor Dumas, a visiting obstetrician in Doctor Kwak’s practice. It’s nice to meet you.
Look, there’s no easy way to say this, so at the risk of sounding blunt, I have some bad news.
The technician and I reviewed your scans and we found that you’re about ten weeks along with a human fetus. I’m not seeing …
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A normal pregnancy framed as a one with special needs
We tell ourselves many things about our health each day, every day, all day long. The vast majority are unintentional, uninspired and blunt. A particularly sinful dessert brings admonishment, “You should not have eaten that.” Panting after two flights of stairs call for an exasperated, “I am out of shape!” Receiving a diagnosis prompts mental overdrive of “What if I don’t survive this?” thoughts.
Learning my diagnosis of chronic kidney disease …
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5 messages you should say about your health
I know the ropes at the VA … I’ll pick up the phone in a heartbeat and call my senator and get what I need right away. A lot of guys aren’t like that.
–Max Gruzen, PTSD patient, Vietnam veteran from the New York Times
So this is what it means to be an “engaged” patient in the VA system today. You have to know a senator who will intervene …
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How entitlement undermines patient engagement
Feminism is the radical notion that women are people.
– Marie Shear
Recent speaking clients know that I often note the parallels between the patient movement and other cultural revolutions: the women’s movements, civil rights, gay rights, disability rights. (I mention disability issues less often, but it was disability advocate Ed Roberts who said in the 1990s, after years of struggle: “When someone else speaks for you, you lose.”)
As anyone who’s heard me …
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Women’s right to vote and the e-patient movement
When I was a little girl, my dad was my hero. He was strong and brave, and it only took his presence to make me feel safe and secure. I thought he understood everything there was to know in the world. I believed he could solve any problem, slay any dragon, protect me from all harm.
That’s the best thing about dads, …
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Remember the fathers of sick children
In an age where technology dominates our medical world, communication between patient and doctor often leave me wanting. Over the last few years as a patient, I have learned a number of strategies to help bridge the communication gap with doctors.
For patients:
Speak up. Nobody likes confrontation, but it doesn’t have to be an argument if you are calm and respectful with your …
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5 ways to bridge the communications gap with doctors
“All patients are alike. This one complains about the same things that the last one did.”
“Every patient is unique. We can never find a way to make each one of them happy.”
Remember that 1980s public health paradox: Do you focus on intensive interventions that might produce significant improvements in outcomes for a defined, high-risk group or do you direct energy to system-level changes that may achieve more …
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Balancing individual care with systemic health fixes
Remember in second grade when you realized that you could say the word “giraffe” 25 times and it would lose its meaning, shed the image of that gawky creature and turn into a little pile of meaningless sound? You know, when you had your first insight into the wonders of language?
I was reminded of this experience when, at a conference about patient engagement in health care, the word “dignity” was …
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What does dignity mean to patients?
I loved my father. His doctor was fond of him, too. Three times we nearly lost him, and each time he pulled through, weaker, but enjoying life. When the magical recovery didn’t materialize, it was hard to believe that this was really going to be the end — hard for my family, and maybe harder for his doctor.
No one wanted time with my dad more than I did. I wanted …
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Speaking up about hospice is not a betrayal of our family members
From years of writing about chronic pain and illness, I’ve learned that young people carry several extra burdens, especially when their disability is invisible (as is more often the case than not). This piece focuses on young people, although some of its points apply to people of any age, depending on their circumstances.
1. Young people are treated as if their health issues can’t possibly be chronic. I confess that before I …
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7 ways chronic illness imposes an extra burden on the young
Hospitals are environments where emotions can run high. These emotions cross all boundaries and can affect physicians, hospital staff, patients and their families. Dealing with an “angry” patient is a common challenge that physicians face.
The first step for a physician encountering an angry patient is to remain calm and allow the patient to express his or her concerns. In my experience, “angry” patients can be viewed as falling into several …
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4 reasons why patients may become angry
There’s a pesky cognitive bias that creates a honking big barrier to patients and families making the most of the health advice and services available to us. It’s the tendency of experts to overestimate the knowledge of others.
One consequence of expertise — or even just easy familiarity with a topic or institution or practice — is the inability to remember not knowing what you now know. Think back to your …
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Doctors often overestimate the knowledge of patients
In a study published in the Journal of the Royal Society of Medicine, “Quality of life: impact of chronic illness on the partner,” the authors stated: “… the most striking research finding is a tendency for the partner’s quality of life to be worse than that of the patient.”
The people who are least likely to be surprised by this finding are not just caregivers but those who are in their …
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6 things not to do as a caregiver
Communication is critical to success in medicine. Our patients depend on us to help them understand their disease and the risks that it may pose. In previous blogs I have commented on how vital effective communication can be in determining outcome — much of my writing has focused on the success associated with outpatient doctor-patient relationships. We now know that when doctors and patients engage, patients become invested in their …
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A hospital stay provides new insights into the patient experience
It looks like an airport lounge without the rolling suitcases. There are about 20 of us cancer survivor-types fiddling with our phones or reading the newspaper. A few of us are sipping delicious contrast fluid in preparation for a scan, but most of us are waiting to meet with our oncologists for follow-up or monitoring visits. All of us are between the ages of 20 and 70 and all of …
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Chronic conditions don’t have normal business hours
