The issue of truth telling in medicine was a lively concern in the early days of modern medical ethics during the 1970’s. A new moral awareness had emerged that provided a clear moral rejection of the paternalistic approach taken in the physician-patient relationship that prioritized the traditional values of beneficence and non-maleficence over truth telling. Of course the key development that fueled this new moral perspective as well as the growing passion for medical ethics was the newfound sense that arose beginning in the 1960’s that patients with capacity have a fundamental right both to refuse unwanted treatment and give voluntary informed consent to treatments they were considering. It became obvious to students of medical ethics that if patients are to be able to exercise their right to give voluntary informed consent they must receive a full and accurate disclosure of the relevant information necessary for them to make a decision.
Up to the early 1960’s, patients coming into the health care system very well may not have had an opportunity to give voluntary informed consent. Giving patients this opportunity just wasn’t part of the medical culture. In the early 1960’s it was common for oncologists to not disclose a diagnosis of cancer; by the late 1970’s there was almost universal agreement that full disclosure was the expectation. The full moral force of the principle of respect for patient autonomy happened relatively quickly, especially after the Belmont Report of 1978, which articulated the basic principles of medical ethics (though non-maleficence was subsumed under beneficence). There is no question that the physician-patient relationship has been evolving ever since with new levels of expectations and involvement of patients and their surrogates. There is now universal agreement that physicians are expected to be truthful to patients and accurately disclose their medical condition, including diagnosis and prognosis. Without this first basic step of truth telling in disclosing the medical facts to the patient about their condition, patients cannot exercise their right to express their preferences and wishes about medical treatment and care goals, and specially give voluntary informed consent to medical interventions to treat their condition.
In spite of this progress of leaving behind the old legacy paternalistic medicine and entering the new era of respect for patient autonomy, when one looks at certain areas of clinical medicine, one realizes that there are certain types of diseases and conditions today about which physicians sometimes fail to disclose or do not explain fully to their patients.
Take for example, Alzheimer’s disease, which currently affects well over 5 million patients currently and that number is expected rise dramatically in the next decade or so. This is a terminal disease for which there is not only no cure but also no real treatment option that alters its natural course. Patients, if they live long enough, will almost inevitably become totally incapacitated and enter a new reality of fleeting discrete moments of consciousness. To inform a patient that he or she has Alzheimer’s disease is the epitome of giving bad news. It is hard, and many physicians actually don’t disclose the diagnosis even when it is clear there is a clinical basis for making it. Tragically, when physicians see patients with new symptoms that indicate Alzheimer’s disease, many of these patients have capacity, which means they are quite capable of understanding their diagnosis and prognosis, and still have time to do some crucially important planning for their future care. Most importantly, they will be able to express their preferences about life sustaining treatment in the event of major medical events, which almost certainly will happen to these patients. Without such plans, patients at the end of their lives, in highly vulnerable conditions, will be at risk of entering the healthcare system via emergency departments and receiving aggressive, burdensome, and unnecessary treatment. Such a result would stem directly from physicians not adequately informing patients of the diagnosis or revealing the natural course of the disease, and of course, not taking the time to discuss advance care planning.
Another disease that physicians often do not inform the patient they have, which has reached epidemic proportions, is obesity. Well over one third of all adult Americans and almost 20% of children are obese. Obesity-related conditions include heart disease, stroke, type 2 diabetes and certain types of cancer, some of the leading causes of preventable death. The estimated annual medical cost of obesity in the U.S. was $147 billion in 2008 U.S. dollars; the medical costs for people who are obese were $1,429 higher than those of normal weight. The clinical criteria necessary to make a definitive diagnosis are clear. In the body mass index, a bmi greater than 30.0 kg/m2 is considered obese, and a bmi greater than 40.0 kg/m2 is considered morbidly obese (morbid obesity). In spite of these clear diagnostic criteria, physicians often talk around the diagnosis and avoid stating the diagnosis candidly to the patient and offering viable treatment plan. Presumably, as in the case of dementia, there is a considerable social stigma, including shame and embarrassment, associated with this diagnosis. But is this a reason for physicians not informing patients of a serious medical diagnosis that can and even will likely lead to life threatening and costly acute medical conditions? Granted, obesity is often a behaviorally based medical condition that requires compliance and willingness to change life style habits on the part of the patient. But how can patients change if they are not informed by a direct and full disclosure of their diagnosis?
The final area I want to point to where we know patients and families do not always receive a full understanding of the patient’s medical condition and the prognosis is end of life care. This is an umbrella concept that would include Alzheimer’s disease, a terminal illness, which is often not framed in those terms, but also a wide range of medical cases from ICU and oncology. I will just focus on the later two settings. Anyone who has spent time in ICU’s knows that patients often receive aggressive, life supportive care in the face of diminishing returns in terms of possible benefits. I fully recognize there are the occasional 1 in 100 cases where the patient makes a recovery and receives a genuine benefit of more quality life. But what about the other 99 cases in which there is a marginal benefit or no benefit provided? Are family surrogates being told that there is a real chance of the patient dying? That additional treatment options may be burdensome and will likely not work? Have those medical facts been fully evaluated in light of the patient’s known wishes? My sense is that so often if family surrogates knew more about what patients were going through for the 1 in 99 chance of a benefit they may reconsider in the name of best interests of the patient; and there are times, if they considered those burdens in light of the patient’s wishes treatment may be discontinued in the name of substituted judgment. I realize I am only alluding to, not fully accounting for, a trend in ICU, rescue medicine but I have witnessed so many cases that seem to continue on autopilot for all out life supportive care when the there were real likelihood those therapies would not be successful. In all such cases, physicians must provide hope. But this must be done along with a clear disclosure of the risks and burdens of treatment and the likely outcomes, which include not only death but also compromised states of quality of life, such as living bedridden for years in a nursing home on a tracheostomy and G-tube.
Oncology is also an area where truth telling is essential but hard. Again, there is no question that cancer patients and their families need hope but they need the basic truth. We only need to look at the recent book and PBS video by Atul Gawande to appreciate how difficult this task is. He describes one of his patients, a 39-year-old new mother with stage 4-lung cancer. Looking back on this patient, Dr. Gawande knew there were no viable curative options. Understandably, she and her husband wanted to try any option that gave them hope for extended life. Dr. Gawande easily feel into that mindset and did not disclose the almost certain lack of efficacy of the treatment option which she pursued. In retrospect after the patient’s death, her husband shared with Dr. Gawande how the burdens of that treatment, which she finally realized was unbearable and stopped, robbed them of quality time together in her final days. It was startling to me to hear Dr. Gawande admit that he lied to the patient and her husband about the treatment plan in overstating its potential for to provide a benefit. One can only wonder how often do physicians fall into such traps of avoiding the truth to patients and families?
I want to fully acknowledge I have not provided evidence of widespread lack of truth telling in contemporary medicine. But I think I have provided enough allusions to real situations to warrant all of us to have concern about just how truthful physicians are in communicating to patients and families in many situations. Without truthful disclosure of the patient’s diagnosis and an realistic description of the proposed treatment options and natural course of the disease, patients and their surrogates neither give valid informed consent to treatment nor are capable of making important life plans based on values they hold dear.
Ironically, in an era in which patient autonomy is celebrated as a paramount value, perhaps we need to return to some of the basic implications that follow from respecting patients as full moral agents: truth telling is a basic obligation of physicians.
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