Telling the Truth About Terminal Diseases
Ethics, the foundation of a working society, are especially important in a patient/surgeon relationship. In The Ethics of Surgical Practice: Cases, Dilemmas, and Resolutions authors James W. Jones, M.D., Ph.D., M.H.A, Laurence B. McCullough, Ph.D, and Bruce W. Richman, M.A., provide a collection of clinical case studies representing a wide range of the ethical issues surgeons confront today. In the excerpt below the authors ask, how to respect end of life issues? View last week’s excerpt here.
After the game, the king and the pawn go into the same box.
You have excised a pancreatic adenocarcinoma from your respected college biology professor, who is now retired and widowed at age 85. He returns for follow-up examination after 9 months. Laboratory tests and imaging confirm recurrence of the tumor, with widespread metastases. He is being treated by a psychiatrist for depression and mild dementia, but remains legally competent and maintains his own home. His three adult children, two sons and a daughter, are ardent in their request that you withhold the bad news from the patient. Radiation and chemotherapy are marginally indicated for palliation, but he will probably consent to the therapy if you refer him. The patient hasn’t asked you for results of the diagnostic tests. What should you do?
(B) Ignore the family’s request. Tactfully tell the patient that his cancer has
recurred, and seek his consent for aggressive treatment.
(C) Tell the patient only if he specifically asks about his prognosis and recommend
(D) Dissemble and minimize the seriousness, even if he asks. Tell him that
some other doctors are going to mop up the remaining cancer cells.
(E) Tell the patient the truth. Provide him with appropriate referrals.
Informing a patient when surgical therapy has failed and the prognosis has changed from good to terminal is an unpleasant and even painful responsibility of surgical practice. Dr. John Gregory (1724–1773), in the first medical ethics book written in the English language, noted that a “Physician is often at a loss in speaking to his patients of their real situation when it is dangerous.” Indeed being frank with seriously ill patients and their families, Gregory added, is one of the “most disagreeable duties” and a “painful office” of the physician. The task becomes all the more emotionally distressing when bad news must be conveyed to younger patients or patients for whom the surgeon has developed a special regard and affection, as in this case. Family members, believing that they are emotionally protecting the patient but acting in their own interests as well, may want the physician to conceal from the patient knowledge that the battle with disease has been lost. In our capacities as healers, our own instincts are to protect our patients from whatever will cause them pain, and our professional nature makes us loath to concede that our therapy has failed. Why not euphemize the message as this family requests?
Option (D) certainly appears at first to be an attractive and sensitive choice, but it is not ethically acceptable. Dissembling and obfuscating are ultimately self-protective mechanisms, intended here to save the family from having to confront an anticipated emotional storm. Sometimes physicians mask this reality when they assume without basis that a terminal patient will not want to know the truth about his condition and prognosis. Not coincidentally, this approach saves the surgeon the torment of breaking the news, supporting the patient through an intensely difficult time, and perhaps even accepting an angry, accusatory response for having failed to arrest the disease. Though advertised as sparing the patient an intolerable insight into his limited future, the real motivation for such a deception is often the self-interest of the family and physician in sparing themselves an emotional storm.
The issue is particularly sharp on the surgical specialties, because when our treatment fails there is usually no saving alternative; we are the doctors of last resort. For many diseases, surgical therapy is the “gold standard” which, when it fails, dashes hope and heralds terminal illness. We cannot truthfully soften the blow by dangling the hope that other specialties will have the answer that we could not find. Once surgical therapy has failed, the surgeon’s role is reduced to nibbling around the edges—two-thirds of surgeons readily admit they are not trained in competencies for nonsurgical care such as pain management, care coordination, and nutrition. The surgeon’s last important duty is to fully inform the patient and the family of how well or poorly surgical therapy has turned out and what they can expect, not just immediately post-op, but at every stage of follow-up until indicated referrals have been made to specialists in end-of-life and/or palliative care. In this case, the surgeon’s duty attaches directly to this patient, who remains competent to make his own decisions about accepting palliative care. Wear considers informed consent for terminally ill patients different from the standard informed consent, and calls for “a candid, to the point of bluntness, explanation of the patients’ basic situation and prospects, with and without treatment, and a clear sense of the potential downsides and limitations of the course of therapy being proposed.” Option (E) therefore emerges as ethically mandated, out of respect for this patient’s autonomy.
Honesty also helps to protect the patient from overtreatment, which is neither benign nor beneficial. The availability of technologically advanced therapies has particularly increased utilization of medical resources in terminally ill cancer patients without necessarily lengthening their lives or improving their comfort. Aggressive chemical and radiation therapy after recurrence in advanced pancreatic cancer metastases typically buys the patient little or no extension of life, but in this case assures additional suffering.
The survival of patients with unresectable pancreatic cancer is measured in months regardless of medical therapy. Earle examined Medicare claims of 28,777 patients 65 years and older dying of cancer and found that 15.7% received chemotherapy within the last 2 weeks of their lives. In a study typical of current literature on patients with advanced pancreatic cancer, after 45 cycles of chemotherapy the median survival was a paltry 6.8 months.6 The authors’ Panglossian conclusions were, “Treatment with NFL is well tolerated in patients with advanced pancreatic cancer . . . survival in these patients with poor prognoses compares favorably with other treatment options.” There are aggressive oncologists who administer therapy costing 100% more than those less aggressive measures. Despite the increased cost and higher morbidity, survival is the same.
By not informing patients of the natural course of their chronic or recurrent diseases, or by mis-characterizing a terminal reality and handing the case off to an aggressive oncologist, the surgeon may be depriving his patient of what end-of-life specialists call “a good death,” an opportunity to come to terms with unresolved emotional, interpersonal, and spiritual issues. These intensely private concerns are within everyone’s personal experience, and cannot rightfully be denied a dying patient by well-meaning spouses, adult children, or compassionate physicians. The considerable majority of patients want their physicians to tell them if they have a terminal illness, and elderly patients, oblivious to the physician’s feelings of helplessness and frustration in this regard, typically expect the discussion in terminal illness to be initiated by their doctor. There are many obvious problems in confronting the termination of life, and patients need genuine direction and useful consultations. What they often get is a baffling shift of responsibility to another specialist who may address the wrong issues. The surgeon now assumes the same ethical obligations as the physicians who referred the patient for surgery: a comprehensive objective description of the disease and prognosis, and referral to the specialist who can best care for the patient. This does not necessarily mean the physician who can briefly extend the patient’s life, but the one who best understands how the patient wants to die. We will therefore rule out option (A), because it deprives this intelligent and competent patient of information he is entitled to have and initiates the process of palliative care without his informed consent, thus doubly violating his right to autonomy in the control of his care. Option (B) gets it half right by informing the patient, but ignores overwhelming evidence that aggressive treatment will mean additional avoidable morbidity without significantly improving outcome. Option (C) relieves the physician of the painful burden of breaking terrible news to the patient, and usually leads to a protracted evasion of professional responsibility.
Telling terminally ill patients the truth about their diagnosis and prognosis is probably the most painful of all physicianly responsibilities to fulfill. This seems particularly true for surgeons, who intend to deliver definitive cures. When the patient is personally dear to the surgeon, as in our case, or is young with an entire life to forfeit the reluctance to bear the bad news is naturally that much greater; our professional training gives us no special insight into the mysteries and terrors of death, and we hate and fear it as all humans do. Nonetheless, sparing the patient with false hope betrays the surgeon’s important role as a trusted authority figure, and thinking that oncological therapy is a recommended continuation of therapy is likely to encourage patient demands for overtreatment, with all the useless suffering it may bear. The moral obligation is to give the patient information and offer several directions depending on the clinical situation and the patient’s desires. Using a surgeon’s practical knowledge to educate and properly direct such a patient is your last and perhaps most meaningful duty.