It is completely understandable if you associate the term “cancer survivor” with an image of glamorous, defiant Gloria Gaynor claiming that She. Will. Survive. Or maybe with a courageous Lance Armstrong in his quest to reclaim the Tour de France. Or perhaps it is linked for you with heroic rhetoric and pink-related racing, walking and shopping.
Phil Roeder from flickr.com
I never call myself a survivor because when I hear this term, I recall my experience following each of four cancer-related diagnoses. It has not been triumphant. It’s been terrifying and grueling. It hasn’t taken courage to get through the treatment. It’s taken doing the best I can. I am not still here because I am defiant. I am here because I am lucky, because I am cared for by good clinicians who treated my cancers based on the best available evidence, and because on the whole, I participated actively in my care. But mostly I am here because each successive diagnosis was made as a result of being followed closely with regular checks and screenings and because my doctors responded effectively to questionable findings and odd symptoms.
There are 12 million Americans living today who have been treated for cancer. Not only are we at risk for recurrences but, as Dr. Julia Rowland, director of the Office of Cancer Survivorship at the National Cancer Institute, notes, “Research shows that there are no benign therapies. All treatment is potentially toxic and some therapy may itself be carcinogenic. Today, people are living long enough to manifest the health consequences of efforts to cure or control their cancer.”
Who amongst our clinicians is responsible for helping us watch out for those consequences for the balance of our lives? Read more »
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*
There seems to be an inverse relationship between the amount of spin one hears about “the next big thing”…and reality. First it was EMRs and virtual e-visits, then social media, and now patient portals seem poised to be next big thing. The drumbeat of vendors and pundits is unmistakable….physicians that don’t adapt will be toast. It can all sound pretty convincing until you ask to see the evidence. What do patients think?
Take the physician patient portal. If you read between the lines, patient portals are frequently being positioned as the new “front door” to physician practices. By signing on to a secure website patients will have real time access to the electronic health record and will be able to communicate with their physicians by e-mail. Additional patient features include being able to schedule an appointment with their doctor, reading their test results and refilling prescriptions. But despite these features, according to John Moore at Chilmark Research, “nationwide use of patient portals remains at a paltry 6%.”
Ok… so now we know what vendors and pundits think about patient portals. What about patients – what do they think? Read more »
*This blog post was originally published at Mind The Gap*
In 1986, when Congress passed the Emergency Medical Treatment and Active Labor Act (EMTALA), hospitals and ambulance services were mandated by law to stabilize anyone needing emergency healthcare services regardless of citizenship, legal status, and/or insurance status.
This was instituted at the time to prevent the prevalent practice of “dumping” — refusing to treat patients because of insufficient insurance or transferring or discharging patients on the basis of anticipating high diagnosis and treatment costs. While the implications of this law are indeed very noble in providing undifferentiated care to all patients based solely on healthcare needs and not financial status, it has unfortunately led to many patients presenting to the emergency department (ED) for primary care issues.
The misconception is that the care in the ED is similar if not better (because of increased access to consult services and imaging) and quicker than waiting to see your primary care physician (PCP). A 2010 study published in Health Affairs found that 14 percent to 27 percent of visits to hospital EDs are nonemergent, such as minor infections, strains, fractures, and lacerations. The study found that all of these cases could have been appropriately triaged in urgent care centers or retails clinics.
England has a model that may be a potential solution. The healthcare goal of the National Health Services (NHS) is to “treat the right patients in the right place at the right time.” The NHS employs nurses and paramedics to handle 999 (their equivalent of our 911) triage calls with more appropriate triaging of patients based on acuity. Read more »
Her eyes were bloodshot. She responded to my casual greeting of “How are you?” with a sigh. “How am I? I’m alive, I can tell you that much for sure.” She went on to describe a situation with her adult son who’s in a bad marriage and has struggled with addiction. She sighed again: “I feel weak. I don’t know if I can deal with this one. I’ve had so many hard things in my life already. When will it stop?”
“Many hard things” — yes, I agree with that assessment. She’s been my patient for more than a decade, and I’ve had a front row seat to her life. Her husband died a few years ago (while in his 40′s) of a longstanding chronic disease. Her daughter also has this disease, and has been slowly declining over time. I’ve watched her bear that burden, and have actually shared some in that load, being the doctor for the whole family.
I’ve also taken care of her parents, who had their own psychological problems. They were difficult patients for me to manage, and they had died long enough ago that I had forgotten that difficult chapter of her life. I’ve helped her with her emotional struggle from all of this. It was hard, but she hung on as best as she could. I know. I was there when it was happening.
To me, this is the biggest benefit of primary care. Yes, it’s nice to have a doctor who knows what’s going on with all of your other doctors. It’s good to have a doctor you are comfortable talking with about anything. It’s good to have someone without a financial stake in doing surgery, performing procedures, or ordering tests. But the unique benefit a long-term relationship with a primary care physician (PCP) is the amazing big picture view they have. Read more »
*This blog post was originally published at Musings of a Distractible Mind*
“MEN WANTED FOR HAZARDOUS JOURNEY. SMALL WAGES,
BITTER COLD, LONG MONTHS OF COMPLETE DARKNESS,
CONSTANT DANGER, SAFE RETURN DOUBTFUL. HONOR AND
RECOGNITION IN CASE OF SUCCESS.”
With this want ad, circa 1914, Sir Ernest Shackleton recruited 28 souls with an unimaginable challenge: To cross the unexplored Antarctica on dogsled. The polar explorer knew exactly what human characteristics he needed to pull off such a feat and understood that straight talk would resonate with a few select men.
Shakleton and his crew boarded their ship, the “Endurance,” and sailed the world’s most dangerous oceans straight into harms way — still considered one of the world’s greatest survival stories. Amazingly, all men survived against unimaginable odds. Their story reminds us that we all stand on the waves and wakes of dreamers, doers, slaves, and fools, all who say, “We did it, took our chances, immigrated to the U.S., headed West, built a new business, risked it all.”
And, if you listen closely, you will hear their stories as an invitation that has been repeated throughout history: “What will you do? Whether your turn or your calling, what will you do?”
Today, I’m posting a similar want ad to medical colleagues. The journey may be far less physically dangerous, but considering prevailing attitudes, perhaps it’s as daring in imagination. Read more »