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 …
What does dignity mean to patients?
“Motherhood is the hardest job you’ll ever love.”
I’m not sure who first coined that phrase, but its truth becomes clearer to me every day. And nowhere is that truth more evident than in mothers of children with a serious illness.
Throughout my years of working at this hospital, I’ve had the privilege of knowing dozens of moms who find themselves within these walls …
Remember the mothers of sick children
My family’s world changed instantly upon receiving Annie’s diagnosis of apraxia and autism spectrum disorder (ASD) a day before her second birthday. Hearing three words, “she has autism,” we suddenly faced a lifetime of uncertainty. I knew that I had to embrace my role as a mother of a child with autism, and as an autism champion — and more critically, find a physician that I could form a trusted …
Autism treatment requires a collaborative patient-doctor relationship
As health care providers are tasked with more administrative duties such as documentation, coding, and billing, the goal to minimize health care costs will continue to be extremely challenging.
In my role, I work with physicians on these challenges daily to ensure not only do the physicians get paid accurately but patients understand their benefits when they see our physicians. Currently, I am the revenue cycle manager for the department of …
Empowering patients to become proactive with their medical bills
My husband suffered with hip and low back pain for about four months. It started right about the same time he was prescribed a new blood pressure medication. He didn’t think much of the pain at first because he was recovering from a groin injury, the result of a close encounter with a hockey puck while playing the game.
But the pain grew in intensity over the following weeks. He’s a …
Uncovering the answer to a case of chronic hip pain
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 …
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 …
7 ways chronic illness imposes an extra burden on the young
I heard this on the radio recently: Mom takes her new baby to the emergency department on a weekend because she thinks her daughter might have a urinary tract infection. She’s right, but regulations say the baby has to stay in the hospital for two days to ensure the infection clears. Afterwards, the mom is surprised by and concerned about a $7,000 hospital bill for the baby’s care.
The …
Are the benefits of price transparency overstated?
It was only a matter of time before the name Dr. Stanislaw Burzynski would grab the attention of the family of McKenzie Lowe, a 12-year-old from Hudson, N.H., with that most damning of diagnoses, a diffuse intrinsic pontine glioma, an inoperable brain tumor with a median survival of less than a year.
Like McKenzie, my own daughter was 12-years-old with a recurring brain tumor that had started to metastasize and …
Should doctors tell parents of terminal children to quit pursuing quackery?
I’m not a doctor. And sure, you know your patients better than I do. But, I have been a patient and as a patient, I know how we think. As someone who works in health IT helping to create software to better connect patients and providers, I like to think I have a hypersensitive pulse on what’s going on.
I know that as patients, sometimes we get frustrated trying to solve …
Feedback your patients wish you knew about portals
On December 31, 2011 right before midnight, I took the test of excitement and new beginnings and found out that I was pregnant. While this news was joyous in nature, it was soon marred by uncertainty and harsh reality.
After my test, I followed up with a doctor’s visit a month later, as was expected, and soon learned that the cost for this bundle of joy would be around $12,000 to …
When childbirth becomes a financial stress
An excerpt from In Sickness as in Health: Helping Couples Cope with the Complexities of Illness.
You are not a statistic
Ironically, the surgeon who repaired her heart also left her heartbroken. While he and the neurologists may have considered it their obligation to present what they envisioned as …
Look for a doctor who understands healing
Bewildered, panicked, and disheartened. I watched my mother’s eyes dart back and forth as she read the pharmacy’s prescription cash price list, knowing she could not possibly dig deep enough in her faded purse to pay for her monthly medicines. In her early fifties, she did not qualify for Medicare, nor could we afford the COBRA payments that would extend coverage for our family since my father’s recent lay off.
We …
The costs of care challenge requires a physician’s creative compassion
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 …
Doctors often overestimate the knowledge of patients
I went to see my oncologist for my six-month checkup yesterday. All was routine, other than my blood pressure being 131 over something when it’s usually in the 115 range, even when I see my family doctor. No anxiety there.
When he asked what had changed in the last six months, I told him about the endoscopy I had in December, which turned out to be normal. But what prompted it …
Residual fear after a cancer diagnosis
When I read news articles about caring for elderly parents at a distance, I sometimes shake my head. There’s a tendency to put the best spin on the experience: As long as you contact the right people, get the right information and treat the ups and downs as just part of life’s challenges, you’ll be fine. You can do this!
I find myself wondering when the author last talked to a caregiver …
Family caregiving is hard and imperfect
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 …
6 things not to do as a caregiver
Please let us know that we’re not alone. We realize that our doctors are not our friends, but telling us that the medical team will be sticking with us during this journey that we were never on board with, is an empowering message when we are at our most powerless.
Show us that you care about our child, too. We know that you identify our …
From a mother: What my child’s oncologist should know
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 …
Chronic conditions don’t have normal business hours
Attempting to alter the health care marketplace so provider decisions are based on patient value has shaped my career for the last 20 years. Often use of the health care delivery system creates a learning opportunity for me as well as the poor, unsuspecting provider of care. A recent experience was instructive.
A close encounter with a jungle rock while mountain biking sent my husband back to our cruise ship with …
Patients can’t solve health costs, even with skin in the game
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