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 was diagnosed with a blocked bile duct and I …
Experiencing the revolving door of physicians in the hospital
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 …
Organ recipients need strong partnerships with their doctors
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 …
The duality that cancer patients face
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 …
How to get the most out of your oncology appointments
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 …
What patients can learn from public hospital ratings
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 …
When patients are socialized into the sick role
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 …
Learn to celebrate Christmas: Lessons from hospice patients
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 …
When there was no hope, I used my imagination to create it
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, …
Stop the stigma and give patients a chance
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 …
I do not require perfect health to be happy
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, …
Patient safety requires a commitment from top management
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 …
What being a cancer survivor has taught me about food
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 …
Receiving disability payments is more difficult than one might think
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 …
What would your personal health checklist look like?
I believe that when people are in a crisis situation small things can become magnified; good and bad, and especially in the healthcare field. A perceived small rudeness may just be the tipping point that causes a patient to leave a practice or go to another hospital. On the other hand, a smile, a kind word or gesture can impact someone more than you will ever know and leave a …
There are no small jobs in any organization
I remember, some years ago, sitting with a relative across a large wooden desk in a doctor’s private office. We discussed symptoms for half an hour during an initial consultation. On a different occasion, I recall another doctor pinning an MRI on the wall, circling an area and articulating exactly why the radiologist overlooked a diagnosis. There once was a doctor who stood bedside, outlining what was known, what was baffling and …
How entertainment has altered our desire for diagnosis
Visiting the dementia unit of a nursing home is never easy.
First off, you have to find your patient amid the assemblage of people–mostly women–seated in wheelchairs, recliners, wingbacks, sofas and assorted walkers, or wandering around.
Then, you must make yourself known to the person you’ve found. Here’s where the harder questions arise: How can I introduce myself and convey my role–a hospice chaplain–to someone who has outlasted language? Is my state …
The long years between the last words and the final breath
If you want to know if restaurant food is safe, there’s help. Just look at the signs in the window showing that the eatery got an A, B or worse on its latest government inspection report. There are government inspection reports for hospitals too, but you won’t see them on the front door or any place else in the hospital, for that matter.
Hospital inspections conducted by state departments of health …
My search for helpful quality information on hospitals
I want to clear up a misunderstanding often voiced in the healthcare blog universe: namely, whether health care is a right or a service. Our answer to this question will affect how we approach healthcare reform in the next Congress, so let me say plainly: health care is a civil right.
Civil rights are what we call those claims necessary to secure free and equal citizenship, secondary to basic rights. For …
Why health care is a civil right
When I learned recently that I would need cataract surgery, I researched New York City hospital ratings from three well-known sponsors: US News & World Report, the federal government’s Hospital Compare and the Leapfrog Group. After writing about what I discovered, I wondered if perhaps a few measures might offer a clue or two about how to better honcho some of my care, like the one that asks hospital patients …
Having patient satisfaction data isn’t enough to choose a hospital
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