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 health care 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 health care 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 percent 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.
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 health care 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 health care 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. Health care providers that have no relationship with a patient or family are at an extreme disadvantage when delivering negative health care 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 health care 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.
As with most things in medicine, change often occurs around health care 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.