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.
One magical thing I see while working in health care is the love story. Each and every child who encounters a diagnosis or illness spawns a collection of love stories around them. The stories come spontaneously from parents, siblings, friends, nurses, doctors, community, and peers. It all happens organically and sometimes it happens without notice. Babies cling to their parents when they ache; parents cling to their children when they …
Read more…
Behind every illness, there is a love story
We are a new generation of physicians and physicians in training. The words “stem cell therapy,” “Robertsonian translocation,” and “artificial tracheal transplant” were part of our vocabulary from the first day of medical school. At the astounding speed at which scientific advancements are made, our ability to incorporate new material is in a constant state of change.
Slowly, the heavy textbooks became relics, as we migrated towards a mobile knowledge, a …
Read more…
Ability to pay for medical expenses should be a vital sign
Supreme Court Justice Potter Stewart famously said he could not define hard-core pornography, but “I know it when I see it.”
We in health care seem to have the same reaction to the phrase, verbalizes understanding when it comes to patient education. Patient medical records, including electronic medical records now include free text notes or check boxes indicating the patient verbalized understanding without actually defining this phrase.
In a world where ambiguous …
Read more…
Verbalizes understanding: What exactly does it mean?
A year ago, KevinMD.com was kind enough to post my piece, 10 Tips from 10 Years Sick. Well, a year has gone by and I’m still sick. So, I’ve re-visited that post, changing several of the tips and adding to others. And, of course, there are now 11 tips, not 10! At the end of the piece, I hope you’ll share your own experiences.
1. The onset of chronic illness …
Read more…
11 tips I’ve learned from 11 years sick
My mom passed away last December to Stage V breast cancer metastasized to her liver. During this battle she developed ascites (an accumulation of fluid in the peritoneal cavity) as her liver failure progressed. This accumulation of fluid was not only extremely uncomfortable but painful as well. In an attempt to find symptomatic relief for the last months of my mom’s life, the oncologist presented us two options: we could …
Read more…
The tragic outcome of a decision to minimize costs
Mirrors reflect, and give us pause for reflection. Not always eagerly sought after or welcome, this reflection does not always reinforce the image one has of oneself. For a physician, publicly-posted patient ratings that contradict the doctor’s perception of his or her standard of care can be jarring.
Through “How Does Your Doctor Compare?”, the physician practice rating collaboration between Massachusetts Health Quality Partners (MHQP) and Consumer Reports, patients can access …
Read more…
Physician ratings can help identify missed opportunities
“I just love working here!” my nurse told me. “We have great supervision, I have wonderful colleagues – we all help each other in an emergency. The doctors are really responsive and I feel like I am doing important work. I thought I would only stay for a year because oncology is so hard, but I’ve been here ten and I still love it.”
This is what we want to hear …
Read more…
Physician disrespect impedes patient safety
There’s a push-pull happening right now in the evolution of health care and it’s all about you. The question under debate is simple: can you handle being the first to know your own test results?
Are you smart enough to read the results? And are you emotionally capable of handling the situation?
Do you need someone next to you when an over-the-counter test tells you whether or not you have a disease? Can …
Read more…
Can you handle being the first to know your own test results?
I recently attended my first AA meeting. It surpassed many of my expectations; however it ruined others and left me slightly dumbfounded.
My imagination, with the help of television and movies, painted a picture in my mind of what an AA meeting would be like. It portrayed a room filled with people that obviously looked like addicts; unkempt appearances, borderline offensive hygiene, and at least one person emitting a radiance of …
Read more…
Reflecting on the first AA meeting
As I like to remind my women’s heart health presentation audiences, I am not a physician. I’m not a nurse. I am merely a dull-witted heart attack survivor. I also warn them that a lot of what I’m about to say to them is already available out there, likely printed on some wrinkled-up Heart and Stroke Foundation brochure stuffed into the magazine rack at their doctor’s office.
So when the organizer …
Read more…
The power of engaging peer-to-peer health care
A friend recently told me his daughter has been accepted into medical school with hopes of becoming a pediatrician. Along with this accomplishment will come $250,000.00 in debt.
I could not help but think of how her educational experience and future practice model will be so different from those who hold leadership positions in medicine today. Tablet computers will replace books and she will live in a 24/7 wired world.
I came …
Read more…
One simple question that is the essence of medicine
I was honored to be part of a beautiful experience in late January of 2011. It was the death of my mother-in-law at the direction of Trinity Hospice in Aiken, SC. Having never thought I would describe death as beautiful the word choice comes as a surprise even to me, a Sagittarius and straight shooter, and in combination with mother-in-law, I would also guess, very suspect. However, sharing in her …
Read more…
How death can be a beautiful experience
Theirs is a lonely journey; to be moving towards the separation and end of all things known and loved.
Being with a dying person is challenging; it penetrates through discomfort seeking honesty and courage. It brings you confrontationally into the present which is shocking for many. But if you spend time with the dying you’ll find that their needs are not so different from ours, only they have a limited time …
Read more…
What meaningful encouragement can be given to someone who is dying?
As a patient who was asked to speak at the Association of Health Care Journalists 2012 conference, I felt a bit covert. I wasn’t in a “backless gown,” rolling my IV pole down the hall of some hospital’s cardiac care unit. I wore an official lanyard and badge and mixed among health care journalists, yet I felt more like a dugout mom than savvy reporter.
My goal was to present the …
Read more…
Health care journalists have tendencies similar to those of doctors
Nothing will force you to live life on your own terms faster than almost losing it.
In 2008, I was on fire. My husband and I had just moved, bought a house, adopted a dog – and I started my own consulting business while continuing to write and act in my spare time. Life was crazy because I was trying to live all of my dreams – at the same time.
While …
Read more…
Adaptation can be painful, but it can also be a gift
I’m not sure when I stopped missing my husband. I suppose familiarity crept in after 7 years together and I rarely felt the pining, agitated pain of separation that I relished in the early days of our passionate love.
Running our restaurant from waking to sleep, 6 days a week meant that we were rarely apart. So JP had become as familiar to me as my 4 limbs, an essential part …
Read more…
Embracing the longing without the outcome
Can you say “reactance”? Don’t feel bad, I wasn’t familiar with the term either until recently. But as you will see, anyone that has ever been a patient will catch on pretty quickly as to what reactance is and how it works.
Reactance is how we respond to something that threatens to limit or eliminate our behavioral freedom. I recently experienced reactance in the course of “prepping” for a colonoscopy. The …
Read more…
Minimize reactance in your health organization
The first time I met Tom his head was on the table at the Christmas banquet held by the mental health support program where I worked. He was sitting next to his wife, who worked on the staff.
Tom’s alcoholism soon brought him into the program, fractured his marriage, and I became his first case manager. The alcoholism had roots in childhood abuse. Years of drinking followed, with hospitalizations, chaos and …
Read more…
Is managed care worth the price of a life?
I wasted time, and now doth time waste me.
-William Shakespeare, Richard II
A friend recently asked me a simple question: Why do we have to wait so long for doctors and not for other professionals, like lawyers, accountants, or dentists? And what can we do about it?
A study by Press Ganey showed that the average time patients spend waiting to see their health provider is 24 minutes. The research was done …
Read more…
Long waits at the doctor’s office disrespect patients
