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.
We entered the hospital with great anticipation. Our baby was overdue and with no signs of delivery, I was admitted and was to be induced the following morning. Three days later our baby would be our greatest blessing on Thanksgiving Day.
It wasn’t until weeks later that we found ourselves scratching our heads over costs we incurred bringing our daughter into the world. We were fortunate to have had fantastic health …
Who is responsible for mistakes in health care? Who should take credit for success or blame for failure? Most families, patients and obviously the courts, hold the doctor responsible. It seems to me this is reasonable; it is the obligation physicians assume and which society returns with empowerment and respect. However, is this changing because of the Internet and big data?
In 2013, most patients have spent hours on the Internet …
In 2009, at age 51, journalist Katie Hafner invited her elderly mother to move from San Diego to San Francisco and live with her and her 16-year-old daughter. Brilliant and funny, Hafner’s mother had also been a divorced alcoholic who lost custody of Hafner and her older sister when they were young …
I am a good patient. I’m organized, I know my health history and I’m particularly polite. I’ll thank you just for giving me bad news.
I look up to you. I do see myself as a partner in my care, but I depend on your expertise. I appreciate the years of schooling and sleepless residency nights that have trained you to know what might be causing my pain and how …
Last week, a friend told me that her mother had been fired as a patient by her primary care physician in a letter she received in the mail. “Our philosophies of care are too different,” was the explanation.
Last week, I fired my oncologist by email. “I have transferred my care to ___ ___.” I gave no explanation, although the note was polite and appreciative.
With the recent Pew Report announcing that “caregivers are wired for support” and digital estate planning resources entering our mainstream consciousness, many of us have been inspired to think about the end of life and our online selves. And we should. Hundreds of thousands of Facebook users die each year, the average American believes that she has almost $55,000 worth of digital assets, though most of us – Read more…
If one searches for “online patient communities” over 19 million Internet sites are found. Online patient communities (OPCs) may exist as subgroups of social media sites, non-profit organizations, and increasingly as part of websites of healthcare organizations and stand alone sites.
Online communities are now becoming a rich source of information gleaned from their discussions. This information will be increasingly used for both clinical and commercial purposes. I will touch on themes which …
Have you heard that soon most primary care in the U.S. will be delivered by teams?
Yep. Team-based care is one of the characteristics of the patient-centered medical home, a way of organizing the care of patients that allows primary care clinicians to see more patients in a day while at the same time delivering better care. This move toward team-based care started long before health care reform and was embedded …
According to a WHO report, more than a third of women experience sexual or physical violence around the world. At such pandemic proportions, violence against women is a serious global health and public policy problem.
In addition to increasing a women’s vulnerability to depression, alcohol use disorders, pregnancy-related complications, and STIs, including HIV, intimate partner violence is a significant cause of death and injury:
42% of women experience injuries from physical or …
I will never forget my first Kenny G concert. It was in the fall of 1994, just a few weeks after I had undergone my second eye surgery, which I had needed to repair my cranial nerve palsy. By that time, I’d already suffered through five other operations from the neck up, and in my seven-year-old mind, I had somehow convinced …
All healthcare professionals are aware that patients flock to the Internet to get information about the disease entity they or a family member is currently experiencing. There is a great deal of excellent evidence-based health information on the internet. There is also a lot of misleading, useless and even dangerous information on the Internet.
Over the years, I have tried many approaches to educating patients as to how …
From your perch in the coffee shop you watch a woman exit the big grey church across the street from the hospital. She’s young, probably not even 40, but she’s dressed like an elderly woman. She’s wearing a shapeless blue raincoat, heavy stockings and wide, steady shoes. Her rosary is looped around her fingers. Across from the church door there is a statue of the Virgin Mary against the fence. …
The demand for patient voices is on the rise as hospitals and dialysis centers, research teams and health care advisory groups face requirements to document our participation in governance and program decisions. And many of us have stepped forward to take on these roles.
Some of us do so as victims of horrific medical errors or uncoordinated care resulting in injury or from disrespectful care that undermines all confidence in health …
You probably know patients who present with entitled attitudes and you may think there’s not much you can do about them. Entitled patients often demand excessive attention and may question your competence when they are not satisfied with how important you make them feel.
By using one or more of the following approaches, you can manage entitled patients respectfully while reducing your risk of stress and burnout.
Physicians are bothered by their patient’s fear. One of the worst parts of actually caring is that when other people suffer and especially when they are frightened, you suffer with them. It is bad when the trepidation is about something real, such as a new disease, but it is particularly disturbing when the source of the fear is confusion or bad information.
There are several common sources of inaccurate terrifying data. …
“Maybe we shouldn’t urge people to engage in their health care: it sets them up for failure and punishment from their clinicians.”
A senior patient advocate and researcher recently made this comment to a gathering of experts in patient engagement.
For a few minutes, I was inclined to agree with her. I thought back over the previous three months: the passive aggressive (and aggressive-aggressive) responses of some of my clinicians to my …
In the business of medicine, one of the brightest hopes is the potential for re-optimizing our spend around what patients want. That’s important because decades of research in the field of shared decision making have shown that when there’s a range of options to treat a condition, informed patients choose less spending and less invasive treatment.
Social media has opened a whole new world for patients. Now, information about disease is readily accessible and available to everyone. Certainly, there are issues with reliability and accuracy of internet sources and this can create uneasiness and misunderstanding for both physician and patient.
However, the internet can also provide many new therapeutic possibilities. In particular, online support groups, twitter chats and blogging can provide a positive outlet for patients suffering …
You’ve heard all of the advice about backing up your computer regularly, making sure that you have your passwords stored in a safe place, protecting yourself against digital identity theft, but what does that have to do with providing care for a person with special needs?
Let’s count the ways.
First: Resources. Much of the information you need is online, and your personalized data may be password-protected. Anyone who has ever been …
When I began to gather my thoughts for this piece, I asked my husband what he thought. It was eye-opening. Even after twelve years of illness, I forget that his life has been impacted as much as mine by my health limitations. This is partly because he’s changed his major task in life to that of caregiver and partly because we can no longer do most of the things we …
