Patients and caregivers writing on KevinMD about the experience of illness and the health care system from the other side of the exam table: navigating care, the doctor-patient relationship, being heard, 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 and chronic pain 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, families, and physicians have said about dying, hospice, and the decisions families face at the end of life, see End of life: what physicians say, in their own words. For what women and the physicians who treat them have said about pregnancy, menopause, and the conditions dismissed for years, see Women's health: what physicians say, in their own words. For what physicians have said about consent, honesty, and who decides, see Medical ethics: what physicians say, in their own words.
Suffering from chronic pain or illness—or, as is often the case, both—can feel like a full-time job. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships as skillfully as possible. This ongoing decision making makes up a major part of the workload in this full-time job—a position we certainly never applied …
My cardiologist recommended I get a stress echocardiogram so he could rule out the cause of some new symptoms. After I had scheduled the test, I realized that some of my other doctors should have a record of this test. But whose scope of concern would include these troubling symptoms? Probably at least three of them: my primary care physician, my survivorship …
Consumerism in health care is coming to mean patients must shop around for the best price — for a doctor’s visit, Cipro, health insurance and maybe even your next operation. The marketplace gurus are telling us we can buy health care like TV sets and search for the lowest price tag.
But can you really choose a place for surgery based on the …
When health journalist Cheryl Clark wrote about the need for crisis intervention for “second victims” of medical error, defining “second victims” as medical caretakers, she struck a nerve. Recommending crisis intervention for staff, highlights the absence of meaningful help for injured patients and their families.
In Clark’s article, a hospital patient safety officer notes that medical error trauma is worse when hospital staff …
When my 40-year old sister was diagnosed with terminal brain cancer, her one, overriding wish as the days ticked down was to die in her own home with her husband Steve and me sitting next to her, eating meals she liked that we cooked as opposed to coping with the institutional food she was being served, and for her three beloved cats to be lying on the bed with her.
Sometimes, angry patients and dissident doctors and nurses warn us about the impending patient revolution – how health care is so unsafe, of such poor quality and so expensive for us patients that we are soon going to rise up out of our beds, go to our windows and, in unison, holler, “I’m mad as hell and I’m not going to take it anymore!”
Complications from my cancer sent me to the hospital again recently. The news that I was in trouble came unexpectedly from my oncologist’s office Thanksgiving eve, following a routine blood test. “Your liver numbers are out of whack.” My response was “Really?” as if I’d been notified that my driver’s license had expired.
I am a cystic fibrosis (CF) patient with a complex medical history that either intrigues or intimidates medical providers. At 40, I’ve dealt with a lifetime of progressive lung disease, gastrointestinal complications and other later onset issues from CF such as osteopenia, diabetes and bowel cancer. I often joke that the recessive CF gene that my identical twin sister and I inherited from our Japanese mother and German father is …
We are often pulled in different, opposing directions, and take time to find the balance between acceptance and anger, surrender and control, individual and group, being and thinking, living and dying. How we find balance and what that balance is influences our attitude.
Throughout my journey, I was struck by a number of dichotomies, or dualities, as I reflected on my reactions …
As a patient, you’re entitled to ask your health care providers anything. In that sense, there are no bad questions.
But some questions will help you get more out of your interaction with your health care providers than others. This advice comes from my experience as a medical oncologist and a cancer survivor.
Before asking your questions, remember that you’re dealing with a …
Recently, I spent some time answering the questions on one of those CAHPS surveys for doctors. CAHPS stands for Consumer Assessment of Healthcare Providers and Systems, and these days hospitals ask patients to use them to review not only their hospital experience but their experience with their doctors as well.
Many public hospital ratings use data collected from CAHPS hospital experience surveys, but patients rarely have much access to …
Each of us wears many different “hats” throughout the course of the day. We are an employee, a wife, a father, a club member, a consumer and so on. It comes as no surprise that our thinking, what we say, and how we say it at any particular time coincides with the hat we are wearing at that moment. The thing about these “hats” or roles is that they come …
For years I’ve been asked the same question: “How can you work in hospice and be around death everyday?” As if death, like this year’s flu, were something we could all just avoid so long as we stay away from it. This question, however, takes on a bit of a different form this time of year as people’s thoughts are centered much more around family. The question becomes more of …
On November 17th, I celebrated the three-year anniversary of the end of my leukemia relapse treatment. In going through the day, I thought a lot about what I went through. I thought a lot about how I ever survived it all. I remember so vividly those hopeless moments, hours, days, months of nausea, pain, and so many forms of discomfort. What stands out to me was the hopelessness and …
I would like to start out by thanking all the fantastic health care workers. As a recovering person with diagnosed concurrent disorders – having both addictions and mental health issues – I have seen the challenges and abuse often faced by doctors, nurses, counselors and support staff working within the healthcare system. This article is in no way meant to hurt, …
Recently, while reading a post in an online chat group for people with chronic lymphocytic leukemia (CLL), I spotted an intriguing comment. At an important conference, a world-renowned hematologist had referred to a “five-year timeline” for a cure.
This took me back fourteen years, to when I’d just been diagnosed with CLL. There was a Gilda’s Club near my workplace; I’d always passed it quickly on my way home. Now I …
One of the greatest risks I faced from surgery to repair a macular hole in my eye was from a hospital acquired infection. But when I tried to find data on the performance of various hospitals in New York City, there were no ratings for Manhattan Eye, Ear & Throat where I would have my surgery. My doctor had moved from a prestigious New York City hospital to Manhattan Eye, …
It’s no surprise that Americans are tilting the scales in the wrong direction. We are straining our waistlines and health coverage beyond the limits.
Unfortunately we live in a culture that promotes it.
Recently, I tuned into my favorite TV food channel to watch famous chefs create exotic dishes with quail eggs and artichokes. Instead I tapped into back-to-back shows that claimed to represent American food. The hosts were a well-known southern …
To catch you up, I received short term disability payments through my employer over the summer. After an initial denial of my claim, I appealed the decision and eventually was approved based on a suspected diagnosis (and the pulling of strings of top executives in the company). With long term disability, I have not been so lucky. My initial claim was denied because they did not see sufficient evidence in …
Think of a time when you’ve felt very sick, maybe a case of pneumonia, a bad bout of the flu, or a more serious illness.
You probably didn’t feel much like “engaging” with people. That’s the term health advocates use to describe what patients need to do to be effective in managing their health care.
It’s very hard to act like the CEO of your own body when you’re unbelievably tired, or …
