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.
You may have noticed an uptick in messages from your health plan or clinician notifying you that “You are the captain of your health care team.” I have seen them here and here and here and here, for example.
My response to this message? Bad metaphor: I am not the captain of my health care team.
I may — on some days — consider myself a member of that team, should I actually …
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Why patients should not be captains of their health care teams
I’ve learned that people will forget what you said,
People will forget what you did,
But people will never forget how you made them feel.
-Maya Angelou
We are often asked, “How can you do that?” How can you stand to do that work? Such a dreary subject. Grim but supposedly necessary. Don’t you get depressed with all the talk of dying? Facing death and its consequences every day must be the prime route …
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Public misperception of the grief counselor
When he was five, my son Daniel went through a rough patch with his asthma. Both he and his sister Allison had been diagnosed the year before, when we were living in Colorado. I never knew if it was the fault of the pollution that too often smeared our view of the mountains, or my then-husband’s two-pack-daily cigarette habit. Or was it the unspoken shriek of anxiety?
After I divorced my …
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Could we exhale, my children and I?
When I first started facilitating a grief support group shortly after moving to New York, my aim was simply to create a supportive environment for members to heal from their grief and to form long lasting bonds of friendship. In the course of five months however, I’ve begun to wonder whether emotional and psychological healing can be contained into an end goal with a finish line.
For the most part, authors …
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After grieving and healing: Transformation
I’ve been chronically ill since I contracted a viral infection in 2001. Were I to recover, I’d take these six hard-earned lessons with me into the land of the healthy.
1. Less is more. I used to be an accumulator. My life was filled with stuff: books and magazines that sat unread; CDs; jewelry; knickknacks and trinkets; clothing and all its accompaniments (shoes, belts, scarves). Since becoming sick, I’ve learned that less …
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6 lessons the sick can teach the healthy
Current efforts of clinicians, hospitals and researchers to make health care more “patient-centered” include inviting some of us to advise on research priorities, care organization and delivery under the assumption that, as patients, we understand what patient-centered outcomes and care are. These invitations and our acceptance of them often result in confusion and disappointment for everyone, regardless of good intentions. What do patients know about the inner workings of …
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Valuing patient and family input in health care
I moved to Florida three months ago to take a job as a primary care nurse practitioner in a clinic for the underserved and uninsured. This position followed four years spent as a home-visiting nurse practitioner working with high acuity, chronically ill patients in the Boston area. I didn’t realize it would be such a transition to go back to taking care of patients in the clinic setting after spending …
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Defining the patient’s goals of care
January of 2010 initiated me into the life of a chronic pain patient. For sixteen months I plunged into a diagnosis journey that brought with it ten misdiagnoses by eleven respected physicians, fifteen procedures and tests, twenty-two medications and crushing pelvic pain.
People have asked me if I am angry about it all; the misdiagnoses, prolonged pain, time spent, needless tests and sometimes painful procedures. Anger is not the presiding feeling, …
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Doctors might not really have a grasp on the art of diagnosis
Once upon a time, I was a newspaper journalist: I chased down sources and sweated over deadlines. Then, in mid-career, I switched to doing marketing and communications for a regional healthcare system. This consisted of a large hospital and many outpatient clinics, including a community cancer center.
Because I handled communications work for the cancer center, I also had a seat on the cancer committee — an oversight group of oncologists, …
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We really need to give our outpatients palliative care
For at least two decades doctors, caregivers, the people they care for, and advocates have deplored the term patient or have been exposed to the arguments of those who deplore it. “Patient” has few defenders in an age in which Western consumers of health care insist on an equal voice in the management of their afflictions, and loathe ceding all power to those who are dispensing relief. This blog recently …
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4 linguistic reasons to leave patient alone
Much is being made of the meaningful use requirement to use secure online messaging to communicate with patients about relevant health information. The new Stage 2 measure requires that more than 5% of unique patients seen by the eligible professional during the reporting period were sent a secure message using the electronic messaging function of certified EHR technology.
But to meet that goal, we have to get our patient population engaged …
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How to improve patient engagement
I am not a disease.
Although when I enter your hospital, or office, or outpatient center, you may refer to me as one. You may lump me together with an odd set of symptoms, or signs. You will define me with those antiquated terms. You will pretend that you will know how I, my body, will react when placed under certain stressors. You will prescribe treatments for my disease, and yet …
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I am not a disease, I am not a checklist
There’s an elephant in the room, one that’s preventing patients from getting the most out of their visits to the doctor — and the name of that elephant is embarrassment.
It’s not unusual to feel uncomfortable about some of the more intimate aspects of your health, but too often this discomfort turns into outright embarrassment. This embarrassment can lead to omissions, which in turn make it impossible for your doctor to …
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3 tips to overcome embarrassment in the doctor-patient relationship
While recently confronted with a cancer scare and several months of inconclusive diagnostics, I found myself thinking about how I want to die.
Following some reading, my first answer was to die at home, with control over my care, and without substantial pain, views that are widely shared by others. But the more I thought about this, the less satisfactory the answer seemed.
For instance, being at home was never of high …
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Second thoughts about how to die
Imagine your spouse, parent, or best friend gets a left ventricular assist device (LVAD). This is a mechanical device put into their chest. A wire sticks out of their body and connects to a bunch of different electronic pieces you’ve never seen before. You’re in charge of making sure this wire stays clean. If it doesn’t, it could mean infection and possible death. So, you know. It’s kind of a big responsibility.
Of …
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The emotional health literacy block
Outsourcing work to cheaper workers is a common strategy of corporations. It has largely escaped the public’s notice, however, that much of this new labor force isn’t located in Southeast Asia, but is rather found here in the U.S. and is virtually free. It is we, using our laptops and smartphones to perform tasks once carried out by knowledgeable salespeople and service representatives.
This was particularly salient to me this week: …
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The chronically ill are those who need online services the most
My daughter loves her career as a probation officer. She is very good at what she does, and finds the work both challenging and rewarding. Yet her client case load includes some of the most unsavory of individuals, found guilty by the courts of child abuse, domestic violence, sexual assault or worse, many of them living with added complexities like addictions or mental health issues. She’s been insulted and screamed at by …
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Physician burnout: Don’t blame the patient
As a healthcare writer, I often spend large chunks of the day reading about medical conditions. I often joke when starting work that it’s only a matter of time before I notice signs of the condition in myself. I remember being convinced I had gallstones for a while until I finished working on a gallbladder surgery multimedia program. Suddenly, the symptoms that had been preoccupying me for several weeks vanished.
I …
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What does it mean to be a good patient?
