- Email: [email protected]
Truth-telling about terminal diseases
Ethics Truth-telling about terminal diseases James W. Jones, MD, PhD, MHA, Laurence B. McCullough, PhD, and Bruce W. Richman, MA, Houston, Tex
From the Center for Health Policy and Medical Ethics, Baylor College of Medicine
After the game, the king and the pawn go into the same box. —Italian proverb 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 the patient is most likely to consent to the therapy if you refer him. The patient has not asked you for results of the diagnostic tests. What should you do? A. Respect the family’s request. Do not volunteer the information about prognosis, and refer for palliation. B. Ignore the family’s request. Tactfully tell the patient 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 palliative therapy. D. Dissemble and minimize the seriousness, even if the patient 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. Accepted for publication October 30, 2004. Reprint requests: James W. Jones, MD, Center for Health Policy and Medical Ethics, Baylor Medical College, One Baylor Plaza, Houston, TX 77030. E-mail: [email protected]. Surgery 2005;137:380-2. 0039-6060/$ - see front matter Ó 2005 Elsevier Inc. All rights reserved. doi:10.1016/j.surg.2004.09.013
380 SURGERY
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 Gregory1 (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 selfinterest of the family and physician in sparing
Surgery Volume 137, Number 3
themselves emotionally. 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 having failed heralds terminal illness and dashes hope. We cannot truthfully soften the blow by dangling the hope that other specialties will have the answer that we could not find in such cases. Once surgical therapy has failed, the surgeon’s role is reduced to tinkering 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.2 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 postoperative, 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.3 Wear4 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 and advanced pancreatic cancer metastases typically buys the patient little or no extension of life, but in this case ensures additional suffering.5-7 The survival of patients with unresectable pancreatic cancer is measured in months regardless of medical therapy. Earle6 examined Medicare claims of 28,777 patients 65 years and older who were dying of cancer, and found 15.7% received chemotherapy within the last 2 weeks of their life.8 A study typical of current literature on patients having advanced pancreatic cancer showed that, after an average of 45 cycles of chemotherapy, the median survival was a paltry 6.8 months.6 The author’s Panglossian conclusions were ‘‘Treatment with NFL is well-tolerated in patients with
Jones, McCullough, and Richman 381
advanced pancreatic cancer. survival in these patients with poor prognosis compares favorably with other treatment options.’’ There are aggressive oncologists who administer therapy costing 100% more than those less aggressive and, despite the increased cost and morbidity, survival is the same.9 By not informing patients of the natural course of their recurrent diseases or by mischaracterizing 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,10 and elderly patients, oblivious to the physician’s lack of omnipotence in this regard, typically expect the discussion in terminal illness to be initiated by their physician.11 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 baffled 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 know, 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 overlay 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 particularl true for surgeons, who intend to deliver definitive cures. When the patient is personally dear to the surgeon, as in our case, or
382 Jones, McCullough, and Richman
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 oncologic 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.
REFERENCES 1. McCullough LB. John Gregory and the Invention of Professional Medical Ethics and the Profession of Medicine. Dordrecht, The Netherlands: Klwuer Academic Publishers; 1998. 2. Darer JD, Hwang W, Pham HH, Bass EB, Anderson G. More training needed in chronic care: a survey of US physicians. Acad Med 2004;79:541-8. 3. McCullough LB, Jones JW, Brody BA. Informed consent: autonomous decision making of the surgical patient. In:
Surgery March 2005
4.
5.
6.
7.
8.
9.
10.
11.
McCullough LB, Jones JW, Brody, BA, eds. Surgical Ethics. New York: Oxford University Press; 1998. Wear S, Milch R, Weaver W. Care of dying patients. In: McCullough LB, Jones W, Brody BA, eds. Surgical Ethics. New York: Oxford University Press 1998. Emanuel EJ, Young-Xu Y, Levinsky NG, Gazelle G, Saynina O, Ash AS. Chemotherapy use among Medicare beneficiaries at the end of life. Ann Intern Med 2003;138: 639-43. Garcia AA, Leichman L, Baranda J, Pandit L, Lenz HJ, Leichman CG. Phase II clinical trial of 5-fluorouracil, trimetrexate, and leucovorin (NFL) in patients with advanced pancreatic cancer. Int J Gastrointest Cancer 2003;34: 79-86. Rocha Lima CM, Green MR, Rotche R, Miller Jr WH, Jeffrey GM, Cisar LA, et al. Irinotecan plus gemcitabine results in no survival advantage compared with gemcitabine monotherapy in patients with locally advanced or metastatic pancreatic cancer despite increased tumor response rate. J Clin Oncol 2004;22:3776-83. Earle CC, Neville BA, Landrum MB, Ayanian JZ, Block SD, Weeks JC. Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol 2004;22:315-21. Hoverman JR, Robertson SM. Lung cancer: a cost and outcome study based on physician practice patterns. Dis Manag 2004;7:112-23. Fernandez D, Perez Suarez MC, Cossio Rodriguez I, Martinez Gonzalez P. Attitude to incurable disease. Aten Primaria 1996;17:389-93. Carmel S, Lazar A. Telling the bad news: do the elderly want to know their diagnoses and participate in medical decision making? Harefuah 1997;133:505-9, 592.
From the Center for Health Policy and Medical Ethics, Baylor College of Medicine
After the game, the king and the pawn go into the same box. —Italian proverb 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 the patient is most likely to consent to the therapy if you refer him. The patient has not asked you for results of the diagnostic tests. What should you do? A. Respect the family’s request. Do not volunteer the information about prognosis, and refer for palliation. B. Ignore the family’s request. Tactfully tell the patient 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 palliative therapy. D. Dissemble and minimize the seriousness, even if the patient 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. Accepted for publication October 30, 2004. Reprint requests: James W. Jones, MD, Center for Health Policy and Medical Ethics, Baylor Medical College, One Baylor Plaza, Houston, TX 77030. E-mail: [email protected]. Surgery 2005;137:380-2. 0039-6060/$ - see front matter Ó 2005 Elsevier Inc. All rights reserved. doi:10.1016/j.surg.2004.09.013
380 SURGERY
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 Gregory1 (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 selfinterest of the family and physician in sparing
Surgery Volume 137, Number 3
themselves emotionally. 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 having failed heralds terminal illness and dashes hope. We cannot truthfully soften the blow by dangling the hope that other specialties will have the answer that we could not find in such cases. Once surgical therapy has failed, the surgeon’s role is reduced to tinkering 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.2 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 postoperative, 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.3 Wear4 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 and advanced pancreatic cancer metastases typically buys the patient little or no extension of life, but in this case ensures additional suffering.5-7 The survival of patients with unresectable pancreatic cancer is measured in months regardless of medical therapy. Earle6 examined Medicare claims of 28,777 patients 65 years and older who were dying of cancer, and found 15.7% received chemotherapy within the last 2 weeks of their life.8 A study typical of current literature on patients having advanced pancreatic cancer showed that, after an average of 45 cycles of chemotherapy, the median survival was a paltry 6.8 months.6 The author’s Panglossian conclusions were ‘‘Treatment with NFL is well-tolerated in patients with
Jones, McCullough, and Richman 381
advanced pancreatic cancer. survival in these patients with poor prognosis compares favorably with other treatment options.’’ There are aggressive oncologists who administer therapy costing 100% more than those less aggressive and, despite the increased cost and morbidity, survival is the same.9 By not informing patients of the natural course of their recurrent diseases or by mischaracterizing 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,10 and elderly patients, oblivious to the physician’s lack of omnipotence in this regard, typically expect the discussion in terminal illness to be initiated by their physician.11 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 baffled 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 know, 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 overlay 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 particularl true for surgeons, who intend to deliver definitive cures. When the patient is personally dear to the surgeon, as in our case, or
382 Jones, McCullough, and Richman
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 oncologic 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.
REFERENCES 1. McCullough LB. John Gregory and the Invention of Professional Medical Ethics and the Profession of Medicine. Dordrecht, The Netherlands: Klwuer Academic Publishers; 1998. 2. Darer JD, Hwang W, Pham HH, Bass EB, Anderson G. More training needed in chronic care: a survey of US physicians. Acad Med 2004;79:541-8. 3. McCullough LB, Jones JW, Brody BA. Informed consent: autonomous decision making of the surgical patient. In:
Surgery March 2005
4.
5.
6.
7.
8.
9.
10.
11.
McCullough LB, Jones JW, Brody, BA, eds. Surgical Ethics. New York: Oxford University Press; 1998. Wear S, Milch R, Weaver W. Care of dying patients. In: McCullough LB, Jones W, Brody BA, eds. Surgical Ethics. New York: Oxford University Press 1998. Emanuel EJ, Young-Xu Y, Levinsky NG, Gazelle G, Saynina O, Ash AS. Chemotherapy use among Medicare beneficiaries at the end of life. Ann Intern Med 2003;138: 639-43. Garcia AA, Leichman L, Baranda J, Pandit L, Lenz HJ, Leichman CG. Phase II clinical trial of 5-fluorouracil, trimetrexate, and leucovorin (NFL) in patients with advanced pancreatic cancer. Int J Gastrointest Cancer 2003;34: 79-86. Rocha Lima CM, Green MR, Rotche R, Miller Jr WH, Jeffrey GM, Cisar LA, et al. Irinotecan plus gemcitabine results in no survival advantage compared with gemcitabine monotherapy in patients with locally advanced or metastatic pancreatic cancer despite increased tumor response rate. J Clin Oncol 2004;22:3776-83. Earle CC, Neville BA, Landrum MB, Ayanian JZ, Block SD, Weeks JC. Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol 2004;22:315-21. Hoverman JR, Robertson SM. Lung cancer: a cost and outcome study based on physician practice patterns. Dis Manag 2004;7:112-23. Fernandez D, Perez Suarez MC, Cossio Rodriguez I, Martinez Gonzalez P. Attitude to incurable disease. Aten Primaria 1996;17:389-93. Carmel S, Lazar A. Telling the bad news: do the elderly want to know their diagnoses and participate in medical decision making? Harefuah 1997;133:505-9, 592.