By JOHN JAMES, ROBERT R. SCULLY, CASEY QUINLAN, BILL ADAMS, HELEN HASKELL, and POPPY ARFORD
Political forces trying to shape and reshape American healthcare without hearing the voice of patients provided the rationale for this work. Our experiences as patients, caregivers, and users of media sources cause us to worry. The Patient Council of the Right Care Alliance developed 6 questions to form a national survey of Americans to guide policy makers. The questions and our rationale were as follows:
3) I will get an infection while receiving treatment. Healthcare-associated infections have dropped somewhat in the past decade, yet there are still about 720,000 infections and 75,000 deaths per year from healthcare-associated infections. Many of these are becoming nearly impossible to effectively treat. The improper use of ordinary antibiotics continues to be a problem in clinical settings.
given the frequency of seeing death and grief depicted in the media or through
real life encounters with friends, relatives, neighbors, or patients? These
incidents trigger uncomfortable and sometimes uneasy thoughts of how we might
personally deal with potential illness and disease. The same thoughts are soon
displaced by the busyness of living.
dealing with the death of his mother from a brain tumor, we learn David
Fajgenbaum was healthy, living life to its fullest, and a future doctor in the
making. He may have thought about his own mortality as he grieved the death of
his mother, but likely never imagined anything dire would happen to him.
Fajgenbaum was pushing forward on several fronts, including leading a
non-for-profit organization for grieving college students, symbolically named
“Actively Moving Forward” or “AMF” after his mother’s initials, all while first
playing college football and then attending medical school. By all accounts,
this was a vigorous young man, meticulous about his diet and physicality. When he became ill, it was a blunt reminder
that life is unpredictable.
In his book “Chasing my Cure”, Dr. Fajgenbaum takes us back to the time when he first got ill. He vividly describes his physical symptoms and various scans which detected his enlarged nodes. Interestingly, we learn how long he was in denial of these symptoms, thereby delaying medical attention in favor of studying. This neglect of self-care highlights part of his personality, but also represents the pressure and expectations placed upon a majority of medical students.
As Robert Muller’s testimony before Congress made clear, we
owe President Trump a debt of gratitude on two counts. First, his unlawful and
predatory actions have clearly exposed the fault lines in our still young
Democracy. As the Founders well realized, the road would be rocky on our way to
“a more perfect union”, and checks and balances would, sooner or later, be
counter-checked and thrown out of balance.
On the second count, Trump has most effectively revealed
weaknesses that are neither structural nor easily repaired with the wave of the
wand. Those weaknesses are cultural and deeply embedded in a portion of our
citizenry. The weakness he has so easily exposed is within us. It is reflected
in our stubborn embrace of prejudice, our tolerance of family separations at
the border, our penchant for violence and romanticism of firearms, our
suspicion of “good government”, and –unlike any other developed nation – our
historic desire to withhold access to health services to our fellow Americans.
In the dust-up that followed the New York Times publication of Ross Douthat’s May 16, 2017 article, “The 25th Amendment Solution for Removing Trump”, Dahlia Lithwick wrote in SLATE, “Donald Trump isn’t the disease that plagues modern America, he’s the symptom. Let’s stop calling it a disability and call it what it is: What we are now.”
Recently a long-time health advocate from California told me
she did not believe that the majority of doctors would support a universal
health care system in some form due to their conservative bend. I disagreed.
It is true that, to become a physician involves significant
investment of time and effort, and deferring a decade worth of earnings to
pursue a training program that, at times, resembles war-zone conditions can
create an ultra-focus on future earnings. But it is also true that these
individuals, increasingly salaried and employed within organizations struggling
to improve their collective performance, deliver (most of the time) three
critical virtues in our society.
Every so often, my cynical self emerges from the dead. Maybe it’s a byproduct of social media, or from following Saurabh Jha, who pontificates about everything from Indian elections to the Brexit fiasco. Regardless, there are times when my attempts at refraining from being opinionated are successful, but there are rare occasions when they are not. Have I earned the right to opine freely about moving on from financial toxicity, anti-vaxers, who has ‘skin in the game’ when it comes to the health care system, the patient & their data, and if we should call patients “consumers”? You’ll have to decide.
I endorse academic publications; they can be stimulating and may delve into more research and are essential if you crave academic recognition. I also enjoy listening to live debates and podcasts, as well as reading, social media rants, but some of the debates and publications are annoying me. I have tried to address some of them in my own podcast series “Outspoken Oncology” as a remedy, but my remedy was no cure. Instead, I find myself typing away these words as a last therapeutic intervention.
Here are my random thoughts on the topics that have been rehashed & restated all over social media outlets (think: Twitter feeds, LinkedIn posts, Pubmed articles, the list goes on), that you will simply find no way out. Disclaimer, these are NOT organized by level of importance but simply based on what struck me over the past week as grossly overstated issues in health care. Forgive my blunt honesty.
By SAMYUKTA MULLANGI MD, MBA, DANIEL W. BERLAND MD, and SUSAN DORR GOOLD MD, MHSA, MA
Jenny, a woman in her twenties with morbid obesity (not her real name), had already been through multiple visits with specialists, primary care physicians (PCPs), and the emergency department (ED) for unexplained abdominal pain. A plethora of tests could not explain her suffering. Monthly visits with a consistent primary care physician also had little impact on her ED visits or her pain. Some clinicians had broached the diagnosis of functional abdominal pain related to her central adiposity, and recommended weight loss. This suggestion inevitably led her to become defensive and angry.
our standard screen for safety at home had been completed long ago, I wanted to
probe further, knowing that many patients with obesity, chronic pain and other
chronic conditions have suffered an adverse childhood – or adulthood –
experience (ACE). Yet, I hesitated. Would a busy primary care setting offer enough
latitude for me to ask about a history of trauma when it can occur in so many
forms, in so many ways and at different times of life? Furthermore, suppose she
did report a history of trauma or adverse experience. What then? Would I be
able to help her?
I began: “Jenny, many patients with symptoms like yours have been abused,
either emotionally, physically, or sexually, or neglected in their past.
Sometimes they have suffered loss of a loved one, or experienced or witnessed
violence. Has anything like this ever happened to you?”
yielded our first breakthrough. Yes, she had experienced neglect, with parents
who were separated for much of her childhood, and then later divorced. She had
seen her father physically abuse her mother. With little parental oversight,
she had engaged in drug and alcohol use throughout her teenage years. But, she
wanted to be sure we understood that this was all behind her. She had gotten an
education, was in a committed relationship, and had a stable job as a teacher.
That part of her life was thankfully now closed.
As news of Tom Brokaw’s cancer diagnosis spreads, so does his revelation that his cancer treatments cost nearly $10,000 per day. In spite of this devastating diagnosis, Mr. Brokaw is not taking his financial privilege for granted. He is using his voice to bring attention to the millions of Americans who are unable to afford their cancer treatments.
My patient Phil is among them. At a recent appointment, Phil
mentioned that his wife has asked for divorce. When I inquired, he revealed a
situation so common in oncology, we have a name for it: Financial
Toxicity. This occurs when the burden of medical costs becomes so high,
it worsens health and increases distress.
Phil, at the age of 53, suffers with the same type of bone
cancer as Mr. Brokaw. Phil had to stop working because of treatments and
increasing pain. His wife’s full time job was barely enough to support
them. Even with health insurance, the medical bills were mounting. Many
plans require co-pays of 20 percent or more of total costs, leading to insurmountable
patient debt. Phil’s wife began to panic about their future and her debt
inheritance. In spite of loving her husband, divorce has felt like the only
solution to avoiding financial devastation.
Each year in the United States, half a million Americans will be treated for burns so severe as to require hospitalization. The “survivors”—including more than three hundred children each day and a drastically increasing number of U.S. military members since the turn of the millennium—can be expected to undergo arduous, agonizing surgeries and painful rehabilitation lasting for years.
The emotional and physical trauma of these fellow citizens is not a pretty picture, nor is it an inexpensive one. According to estimates, patients with severe burns with no complications can expect a whopping $1.6 million bill for treatment over the cost of their lifetime. For patients who do go on to develop complications as the result of severe burns, hospital bills can run more than $10 million.
Where is that money coming from? Partly, it comes from you and me in the form of increased healthcare premiums. But oftentimes, it comes from directly people like me, the cofounder of the Moonlight Fund, a Texas-based non-profit organization for burn survivors and their families. We’re often tasked with raising funds to help with the costs of expensive procedures in addition to the emotional support and caregiver assistance our organization was founded for. Many times, I’ve reached into my own pocket—not because I’m a saint, but because I’ve been there. As a childhood burn survivor myself, scalded over 32% of my body, I’m well aware that infections resulting from burns—which occur in one out of three cases—add between $58,000 and $120,000 to treatment costs. Skin breakdown—which happens one out of two times—adds up to $107,000 more. Disfigurement and scarring? Up to $35,000 on top of that. Then, of course, there are the psychological issues associated with severe trauma. 57% of burn victims need help for these, help that costs as much as $75,000 per patient.
In an effort to help women make informed decisions about where to deliver their babies, we set out to collect a comprehensive, nationwide database of hospitals’ C-section rates. Knowing that the federal government mandates surveillance and reporting of vital statistics through the National Vital Statistics System, we contacted all 50 states’ (+Washington D.C.) Departments of Public Health (DPH) asking for access to de-identified birth data from all of their hospitals. What we learned might not surprise you — the lack of transparency in the United States healthcare system extends to quality information, and specifically C-section data. Continue reading…
A few weeks ago, I saw a young patient who was suffering from an ear infection. It was his fourth visit in eight weeks, as the infection had proven resistant to an escalating series of antibiotics prescribed so far. It was time to bring out a heavier hitter. I prescribed Ciprofloxacin, an antibiotic rarely used in pediatrics, yet effective for some drug-resistant pediatric infections.
The patient was on the state Medicaid insurance and required a so-called prior authorization, or PA, for Ciprofloxacin. Consisting of additional paperwork that physicians are required to fill out before pharmacists can fill prescriptions for certain drugs, PAs boil down to yet another cost-cutting measure implemented by insurers to stand between patients and certain costly drugs.
The PA process usually takes from 48-72 hours, and it’s not infrequent for requests to be denied, even when the physician has demonstrated an undeniable medical need for the drug in question.
These days Americans are more politically divided than ever, disagreeing vehemently about everything from guns to the role of the press. Despite the distrust and inflammatory rhetoric, there are examples of cross-party, trans-Administration collaboration and success. Let’s celebrate them and be motivated by what happens we put differences aside and focus on shared long-term goals.
Using digital technology to empower healthcare consumers is one example of a cross-party win, a still-developing success story that has been cultivated for more than a decade by the efforts of public and private sector leaders from a wide variety of affiliations and political perspectives.