Tag Archives: Cancer

Sharing Bad News or Keeping Secrets—How Physician Communication Impacts Patients and Families

Doctors and Patients bond over time. Information exchange, education and sharing of expertise are critical activities that add to the effective practice of medicine. Delivering bad news is unfortunately an unpleasant part of a physician’s job. Honesty, empathy and clear communication are essential to delivering news to patients and their families—even when the news is unpleasant or unexpected. While communication is an integral part of the practice of medicine, not all healthcare providers are able to relay information or test results in a way that is easily digested and processed by patients. Some physicians may avoid delivering bad news altogether—often keeping patients in the dark. While a paternalistic approach to medicine was accepted as the status quo for physician behavior in the 1950s, patients now expect to play a more active role in their own care. Patients have a right to demand data and understand why their healthcare providers make particular diagnostic and treatment decisions.

Recently, a disturbing report indicated that in a database of Medicare patients who were newly diagnosed with Alzheimer’s disease, only 45% were informed of their diagnosis by their physician. While shocking, these statistics mirror the way in which cancer diagnoses were handled in the 1950s with many doctors choosing not to tell patients about a devastating health problem. With the advent of better cancer therapies and improved outcomes, now we see than nearly 95% of all patients are informed of their cancer diagnosis by their physician.

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How can this be? Why would a physician NOT tell a patient about a potentially life changing diagnosis?

I think that there are many reasons for this finding in Alzheimer’s disease and that we must address these issues in order to provide ethical and timely care to our patients.

  1. Time constraints: Electronic documentation requirements and non-clinical duties allow for less time spent with each patient. In order to deliver bad news such as a terminal diagnosis, a responsible physician must not only spend time carefully delivering a clear message but must also be available to handle the reaction and questions that will inevitably follow. Many physicians may avoid discussing difficult issues due to the lack of time available to help the patient and family process a diagnosis. We must create ways to diminish the administrative burden on physicians and free them up to do more of what they do best—care for patients. More reasonable and meaningful documentation requirements must be brought forward. Currently, many physicians spend far more time typing on a computer rather than interacting in a meaningful way with patients during their office visits. Eye contact, human interaction and empathy are becoming more of a rarity in the exam room. This certainly limits the effective delivery of bad (or good) news to patients. Priority MUST be placed on actual care rather than the computer mandated documentation of said “care”.
  2. Dwindling Long-Term Doctor Patient Relationships: Networks of hospitals, providers and healthcare systems have significantly disrupted traditional referral patterns and long-term care plans. Many patients who have been enrolled in the ACA exchanges are now being told that they cannot see their previous providers. Many physicians (even in states such as California) are opting out of the Obamacare insurances due to extremely low reimbursement rates. Patients may be diagnosed with a significant life changing illness such as Alzheimer’s disease early in their relationship with a brand new healthcare provider. When a new physician provides a patient with bad news—of a life-changing diagnosis that will severely limit their life expectancy as well as quality of life—patients often have difficulty interpreting these results. Healthcare providers that have no relationship with a patient or family are at an extreme disadvantage when delivering negative healthcare news. Long-term doctor patient relationships allow physicians to have a better understanding of the patient, their values and their family dynamics. This “insider knowledge” can help facilitate difficult discussions in the exam room.
  3. Lack of effective therapies to treat the disease: No physician likes to deliver bad news. No doctor wants to admit “defeat” at the hands of disease. It is often the case where some healthcare providers will not disclose some aspects of a diagnosis if there are no effective treatments. I firmly disagree with this practice of withholding relevant information as I believe that every patient has the right to know what they may be facing—many will make significant life choices if they know they have a progressively debilitating disease such as Alzheimer’s disease. In the 1950s, many patients were not told about terminal cancer diagnoses due to the lack of effective treatments. However, medicine is no longer paternalistic—we must engage and involve our patients in every decision.
  4. Lack of Physician communication education: As Medical Students we are often overwhelmed with facts to memorize and little attention is given to teaching students how to effectively interact with patients as well as colleagues. Mock interviews with post interview feedback should be a part of pre clinical training for physicians. We must incorporate lectures on grief and the grieving process into the first year of medical school. Making connections with patients must be a priority for physicians in the future—we must equip trainees with the tools they need for success.  Leaders distinguish themselves by the way in which they share bad news.  According to Forbes magazine the critical components of sharing bad news include–accuracy of communication, taking responsibility for the situation, listening, and telling people what you will do next.

What’s next?

As with most things in medicine, change often occurs “around” healthcare providers without direct physician input. Physicians are appropriately focused on providing excellent care and connecting with patients while politicians and economists craft the future of medicine. The issues with lack of communication of negative findings with patients MUST be addressed. Patients have a right to their own data and have a right to know both significant and insignificant findings. In order to avoid situations where patients are not fully informed about their medical condition, we must continue to remain focused on the patient—even if it means that other clerical obligations are left unattended.

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The Consequences of “Over-Testing”: Doc, Am I Glowing in the Dark?

In medicine today diagnostic testing and advanced imaging is readily available and widely utilized in most every clinical setting  Many physicians have given up the stethoscope and physical exam in favor of an echocardiogram and a CT scan.  Fear of “missing something” pervades every Emergency Department and has resulted in hundreds of thousands of unnecessary testing costing billions of dollars in healthcare expenditures.  Of course, the driving causes of increased testing and utilization of advanced imaging are numerous and complex.  Unfortunately, in my experience, the two most common reasons are fear of malpractice litigation and a desire for greater reimbursement.

How do we best determine when to test?

The most basic testing techniques rely on Bayesian statistics–the question to be answered must be well defined and then a clinician must determine a pre-test probability of the presence (or absence) of the disease in question.  The best utilization of a diagnostic test is when a clinician has an intermediate pre-test probability that a particular disease state is present.  If the pre-test probability is low, then there is no need to test.  If the pre-test probability is high, then the clinician should proceed with treatment rather than an additional testing step.  In the case of coronary artery disease, if you have a patient with multiple risk factors and symptoms that are a bit atypical, diagnostic testing with a stress test with imaging makes sense.  If you have a young person with no risk factors, and very atypical symptoms diagnostic testing does NOT.  In contrast, if you have a patient with classic angina, an abnormal EKG and multiple risk factors you may want to forgo diagnostic imaging and proceed directly to cardiac catheterization.

What are the risks associated with radiation?

In today’s New York Times, authors Redberg and Smith-Bindman argue that the over utilization of CT scans and other radiation based diagnostic testing results in a significant increased risk for certain types of cancers.  I tend to agree.  The radiation exposure associated with one CT scan is equivalent to more than 500 plain chest X-rays.  The FDA estimates that a patient’s lifetime risk of developing cancer from radiation exposure to a CT scan approaches 1 in 2000.  To place this all in perspective, the survivors of the atomic blasts in Japan were exposed to the equivalent radiation to two CT scans!  In addition to CT scans, nuclear medicine based stress testing in cardiology also exposes patients to large doses of radiation (even more than CT).  These tests are recommended at particular intervals by the American College of Cardiology in patients with known coronary artery disease (CAD) or in cases with suspected CAD with appropriate risk factors and baseline characteristics.  However, just as with CT scans, these imaging tests are often over-prescribed and overused.

What are the root causes for the over-use of diagnostic testing?

Much of the over testing seen in the US is due to fear of litigation.  Doctors, as a whole, want to do their very best for patients.  When the encounter a patient with a complaint that seems routine, many astute clinicians also think about more serious diagnoses when formulating a differential.  Anecdotes from colleagues where a particular serious diagnosis was “missed” can often lead to unnecessary testing.  Moreover, the trial lawyers and “ambulance chasers” are an ever present thought for many clinicians.  The fear of being sued for missing a lung tumor in an asymptomatic patient can also lead to more unnecessary and non indicated testing.  This phenomenon is yet another important reason that we must persue tort reform in the US today. Unfortunately, another reason for overuse of CT scanning and other types of imaging is profit.  Profit and finances have no place in the clinical evaluation of a patient–however, economic realities have blurred these lines considerably in the last decade.  There are some clinicians that put reimbursement ahead of patient welfare.  Abuses such as routine, non indicated imaging for cardiac patients has been declining.  New guidelines and more government and regulatory scrutiny into these types of exams seems to be having a positive effect on reducing unnecessary radiation exposures.

What can we do to advocate for ourselves and our patients?

As a patient, it is essential that you ask your clinician precisely why the test is being ordered and exactly what impact the result will have on your clinical management.  As physicians we must have very clear reasons (and well documented reasons) for ordering tests.  Tests should remain an adjunct to history and physical exam for the diagnosis of disease–not a replacement for clinical experience and expertise.

So, next time you order a test (or your doctor orders a test for you) make sure you take time to understand how the exam is going to impact your course of treatment–if you are at a fork in the road, the best test should determine whether you take the road to the right or the left…..If you and your doctor already know which way to go, the test may only be another chance to “glow in the dark…”

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The High Cost of Terminal Illness: Big Pharma Cashes In on Hope

As Obamacare continues to implode, issues with our healthcare system continue to expand.  We are fortunate in the United States to have access to the best technologies in the world.  We also spend more of our GDP on healthcare than any other industrialized nation in the world.  Although the ACA does address insurance costs (by passing on high prices to the young and healthy) as well as access (by providing access to care for all Americans even with pre existing conditions) it does NOT address the escalating cost of drugs and medical devices.  I believe that the lack of regulation of the pharmaceutical industry and the prices that they are allowed to set on newly developed drugs is yet another (in the very long list) of major flaws in the legislation.

This week in the New York Times, I was troubled by a story touting the release and FDA approval of a new drug for the treatment of a particular type of aggressive blood cancer known as mantle cell lymphoma.  Mantle cell carcinoma has a very poor prognosis and is very difficult to treat.  This new drug has been shown to help treat the disease but offers no cure.  Most patient who start therapy with the drug see 1.5 years of good results but then no longer respond.  For cancer patients time is everything–however the issue with this particular drug is the shiny new price tag–$120K annually.  According to analysts the drug could be worth nearly 6 billion in annual sales for Johnson & Johnson and their drug-making partners Pharmacyclics Inc.  The drug is expected to also be approved to treat a common cancer in elderly people known as CLL or chronic lymphocytic leukemia which will expand its indications to an even more common and larger group of patients.

 Doctors who specialize in the treatment of cancers are concerned about the astronomical prices.  Certainly, they are excited to have another treatment option (especially a new one that comes in pill form) but they are surprised at the cost of therapy.  The new therapy has been shown to be superior to current therapy in clinical trials–however the new drug does not offer a cure.  The company supplying the product argues that the cost of the new therapy “is in line with other new drugs for cancer”.  It seems to me that for pharmaceutical makers the cost is based on what the market will bear–given no limits for cost, they are free to charge whatever they like.  It is disturbing that those that make potentially life changing (and potentially life extending) therapies profit from the hopelessness and desperation of those suffering with a terminal illness such as rare and advanced cancers.  To me, it is reminiscent of the carpetbaggers after the Civil War. 

Why is it that physician payments are dictated by bureaucrats–Medicare, Medicaid, CMS and the insurance companies?  Why is it that hospital reimbursement  is dictated by the same?   In the same breath, politicians and others allow pharmaceutical makers to dictate their own terms as to the cost of their product.  Are there hands reaching into deep pockets?

At some point as providers of healthcare we must step in and advocate for our patients and loudly exclaim… “ENOUGH”.

As evidenced by a recent change in the law in the state of Maine, medical consumers are beginning to take matters into their own hands.  In landmark legislation, Maine recently legalized the import of prescription drugs from pharmacies outside the US.  As I discussed on Fox Business recently with Melissa Francis, there are inherent risks with obtaining prescription drugs from pharmacies outside of the FDA’s jurisdiction–there may be impurities and the quantities of the active compound may vary.  However, I believe that competition from outside the US is the only thing that will ultimately bring drug prices in the US back within sight.  Big pharma will argue that the cost of research and development requires a high price tag–however, I do not believe that the US consumer must foot the entire bill.

We MUST continue to innovate and produce novel, more effective therapies.  It is essential that we support our pharmaceutical industry colleagues in the research and development of new technologies through participating in clinical trials and examination of outcomes data.  However, we must stop short of providing big pharma with  a blank check to charge whatever they like for newly developed drugs.  I am opposed to big government and more regulation in general–but something must be done to control drug cost.  Maybe the answer lies in the beauty of the great state of Maine.  Maybe if we allow a little competition from the outside, prices may fall and ultimately more patients will have access to potentially life saving drug therapy and hope will not cost a life’s savings anymore.

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