In his most recent bestseller, Being Mortal, Dr. Atul Gawande has again raised social awareness of the inadequacies of our health care system in assisting patients with end-of-life decisions and care. In his treatise, he laments his own lack of training in medical school and residency regarding what he has emphasized should be a key component of any physician’s education.
To some degree, there has been a greater emphasis on palliative care training in our medical schools since Dr. Gawande graduated two decades or so ago. The subject of physician-patient communication, including those difficult discussions that should occur near the end of life, is now incorporated into most medical school curricula. Additionally, palliative care has become a respected and growing subspecialty within both medicine and surgery.* Despite these improvements, still far too many patients die while receiving futile end-of-life care in our nation’s intensive care units and hospital wards rather than in the comfort of their homes surrounded by loved ones. Although referrals have increased, too few patients are afforded the opportunity to utilize hospice care and, those that do, are often referred too late in the course of their terminal disease to obtain full benefit
Why are we not doing better? Two likely contributors include a physician mindset that only cure is success and death represents failure, and unrealistic expectations of patients as to what modern medicine can accomplish. A more fixable and probably more important factor is the failure of doctors to effectively communicate during these highly stressful circumstances. As emphasized by Gawande and from my own experience, the key to negotiating a sensible path in hopeless, end-of-life situations is frequent, reasonable, and realistic consultation with our patients.
Not only are the conversations usually difficult and demanding, but the choices of whether to pursue treatment or remove life-sustaining efforts are frequently not well-defined. While these challenging clinical scenarios are often painted as black and white in the lay press, any physician or surgeon who has cared for such patients realizes that there is a delicate and precarious balance between providing hope, administering appropriate aggressive treatment, and ensuring patient comfort. In a well-intentioned attempt to leave some remnant of hope, we physicians too frequently paint an unrealistic picture for our patients.
Advance patient directives have been promoted as one means for patients to avoid futile, uncomfortable, and unnecessary care during the last stage of their lives. Though I by no means wish to discourage these often useful legal documents, they should not be entered into naively. For example, aggressive life-sustaining care for a patient with extensive metastatic lung cancer is likely inappropriate. On the other hand, short-term ventilator assistance for an elderly unconscious person recovering from an automobile accident may result in many additional years of enjoyable and productive life. Patients need to understand that all grave clinical situations are not equal and that their advance directives should be flexible enough to cover a variety of circumstances.
It has been well established that most patients and families have selective hearing and understanding. Even when the details of a major operation with a greater likelihood of a negative rather than a positive outcome are carefully and clearly presented using lay language, the potential positive outcomes frequently push the more probable adverse consequences into hidden recesses of the brain. In my experience, the more desperate the situation, the more often it is that the possibility of an unsuccessful outcome will be masked or denied by patients or their family members. Even though in my practice I carefully explained the high probability of eventual recurrence when operating on patients with pancreatic cancer, many of them were surprised and some were even quite indignant when this disappointing consequence developed. In my opinion, the most effective means to avoid such misunderstandings is to always have the patient and/or family relate their comprehension of the just-completed conversation. It is then essential to re-emphasize the important details that they suppressed and pushed to the background from your initial explanation.
In these challenging end-of-life moments, what advice should we offer? One question that should almost never be asked of the patient or his/her representative is: “Would you like everything possible done?” Especially for a family member who may take on considerable guilt by answering in the negative, the response will nearly always be “yes” no matter how unlikely a successful outcome. Rather, I believe that recommending only reasonable options, including and possibly emphasizing the choice of comfort therapy alone despite the certainty of death, is our obligation. We should be cognizant of the fact that the decision made by the patient is often highly dependent on how the alternatives are presented by his/her doctor. After clearly presenting the therapeutic options and their likely consequences, it may be helpful to relate what you would do yourself for a loved one in the same circumstances.