Introduction
Robert M. Sade, MD
The ethical bedrock of contemporary health care is informed consent. We cannot touch others without their permission to do so. The flip side of the informed consent coin is informed refusal. Patients or their surrogate decision makers can refuse care at any time, even if the proffered treatment is life-saving. The refusal can be stated in advance in the form of limitations on future care. Sometimes limits of this kind can seem to an attending physician to be unwise or even foolish, but if they remain after efforts to change them through persuasion, they cannot be disregarded. The following vignette describes just such a case, in which the surgeon has to make a choice of how to respond.
The Case of the Inflexible Wife
Eighty-year old M.D. Baker was being treated for diabetes, hypertension, and chronic kidney disease with a creatinine of 2.5. When he developed chest pain, a CT scan demonstrated a type A aortic dissection with a false lumen extending into the left common carotid artery and proximal descending aorta. Mr. Baker became confused and was intubated and transferred to the university hospital.
On arrival, he is sedated but moving all four extremities. He needs urgent surgery and the cardiac surgeon, Dr. Solomon, discusses plans for ascending aortic replacement with Baker’s family. The patient's wife is his health care agent under his health care durable power of attorney; she says that the patient "would like everything done," but also that "he had lived a good life, doesn’t want CPR, and doesn’t want to be on a respirator." Dr. Solomon tells Mrs. Baker that this is a high risk operation and that complications such as kidney failure and prolonged mechanical ventilation are reasonably likely. She says, "OK, but if he’s not better in a week, we will withdraw support — including dialysis." On further discussion, her position remains adamant. Should the surgeon accept these conditions and do the operation?
Pro
Constantine Mavroudis, MD
Dr. Solomon should accept Mrs. Baker’s limitation on postoperative care and should offer the operation.
This is a case of respect for patient autonomy1 and informed consent2, among other principles of medical/surgical therapy. The patient, through the directives of his caregiver, can either have or not have the operation; the surgeon may operate or not operate. No one can compel the patient toward an operation that he does not want; no one can order a surgeon to do an operation that he finds confining to his idea of total patient care. The con position of not to take on the operation with the defined stipulations, clearly takes into account respect for patient autonomy and informed consent1,2. The patient’s autonomy is respected; the surgeon’s tenets are upheld and preserved. In effect, the standoff is “you play my game or there is no game.” This is true for both parties. The result is that the patient will most likely die considering the severity of the dissection and the low possibility of short term survival if medical therapy is elected. Mr. Baker has presumably lived a full life at 80 years of age and does not want his last moments to be filled with ventilators, dialysis, and the pains of associated care. At first blush, this course seems reasonable. After all it is not altogether certain that he will die from the dissection; but there are alternatives.
If he agrees to the stipulations that Mr. Baker and his caregiver have established, surely Dr, Solomon recognizes that it is unlikely that his patient will be extubated within one week of the operation. The pro position, therefore, assumes that the operation can be performed expeditiously so that Mr. Baker can be extubated within a week, or, better, that he will awaken postoperatively, allowing Dr. Solomon the opportunity to persuade Mr. Baker to extend the period of care needed for eventual recovery. This is consistent with the utilitarian ethical position of trying to persuade another subject when the persuader feels that the subject is pursuing an unethical or misguided course of action3.
In this essay I review the principle of respect for patient autonomy from a utilitarian perspective, with detailed discussion of informed consent.
The Law
The ethical principle relevant to Mr. Baker’s case is respect for patient autonomy, a principle supported by ethicists and physicians and by the United States legal system4. The Nuremberg Code established in 1948 is generally cited as the original international guidelines that identify the obligation of physicians to obtain informed consent for research although there were earlier legal requirements in France and in the US5. In 1914, the case of Schloendorff versus the Society of New York Hospital established that “every human being of sound mind and adult years has a right to determine what shall be done with his own body.”6 There is nearly universal agreement among ethicists and physicians that respect for patient autonomy is an important – even indispensable – principle in the ethical practice of medicine7. US law recognizes the centrality of this principle by prohibiting, in ordinary circumstances, the imposition of medical treatment on a competent adult patient without his or her free and informed consent.
Patient Autonomy
Approaching patients with respect for their autonomy is based on a fundamental acknowledgement of their freedom to hold and to act upon judgments that are rooted in one’s personal values and beliefs1,2. The principle of respect for patient autonomy follows from one of the main contemporary sources of normative ethical theory: utilitarianism. According to John Stuart Mill (1806–1873 – best-known theorist of the utilitarian school), we should respect people’s choices and allow them to do whatever they choose to do—so long as their actions do not interfere with others’ freedom to do as they choose3. Mill opposes paternalism by maintaining that each of us is, on balance, the best judge of what is in his or her best interests. Thus we should respect an individual’s judgments of what would maximize his or her utility. If we believe that a mature and mentally healthy individual is choosing something self-destructive, we can reason with the individual and seek to persuade him or her of the danger, but ultimately the individual is assumed to be the best judge of his or her interests, and this choice should be respected. Respect for patient autonomy requires that the physician take into consideration the expressed wishes of the patient and can be seen as a special case of the larger obligation to maximize utility by allowing people to develop morally in accordance with their own convictions.
Beneficent Persuasion
Beneficent persuasion allows physicians to use decision-making psychology to influence patients to behave in healthy ways or make treatment decisions that promote their long-term goals. Beneficent persuasion is ethically justified as the physician has a duty to support and improve patient welfare while respecting patient autonomy. Swindell et al. note that beneficent persuasion by means of empathy, respect, and negotiation involves using various techniques such as introducing vivid depictions of possible negative outcomes, providing default options to the patient, encouraging patients to think about the regret they might feel if they do not follow medical recommendations, as well as framing and refocusing8. Framing can be implemented by sharing the benefits of the procedure first, then discussing the risks or side effects, and finally finishing the conversation by repeating the benefits once more. Refocusing shows the patient how he or she faced and overcame physical challenges in the past and focuses on the end result instead of the minutiae of the challenges one experiences during the recuperation period and despite the illness or procedure.
Nudging and Informed Consent
Obtaining informed consent is based on the central value of patient autonomy. Recently, libertarian paternalism has been proposed as a way of altering individual decision making that “makes choosers better off while preserving freedom of choice” and thereby simultaneously blending patient autonomy and medical beneficence9. Libertarian paternalism acts as a nudge, helping “alter people’s behavior in a predictable way.” It is paternalistic in that it aims to influence people through means other than rational persuasion to make choices perceived as good for them, and is libertarian because it maintains their freedom to make other choices.
According to Cohen, steering individual decision making, or nudging, allows the “chooser” to be better off without breaching his or her free choice. Nudging is an ideal synthesis between the obligations to respect patient autonomy and to act with beneficence, which at times favors paternalism as long as it is ethically legitimate10. Nudging involves reorganizing the context in which people make decisions by changing the default choice. The choice must be easy and transparent. According to Cohen10 and Thaler and Sunstein11, nudging must not be used to sway people to make decisions, rather, it must observe three guiding principles: all nudging must be transparent and never misleading; it must be easy to “opt out” of the nudge; the nudging aim at improving the welfare of those being nudged12.
Shared Decision-Making
Decision-making is deeply influenced by an individual’s emotions, attachments, and personal habits1. Intuitively, human beings are capable of discerning moral choices by perceptual acuity, patterns of attention, capacity for affective resonance with others, and moral and ingrained tendency to do what the individual feels/sees/knows to be the right thing. Charles et al. established a framework for shared treatment decision-making in the medical encounter between patient and physician13,14,15. They developed this in the context of a “life-threatening disease where several treatment options were available with different possible outcomes” in a specialist oncology practice for early stage breast cancer. The authors’ patient interaction model contains characteristics of paternalism, but also leaves room for the components of shared-decision making, namely, information exchange, deliberation, negotiation, and treatment plan implementation. The physician and patient deliberate together, discuss how the various treatment options meet patient and physician priorities, and finally reach a joint treatment decision13,14,15.
Conclusion
The case and interaction between Mr. Baker, his trusted surrogate caregiver, and Dr. Solomon is complex and time sensitive. Mr. Baker, if he is to survive, needs an expeditious and uncomplicated operation with intensive postoperative care that is likely to exceed the imposed time limit for extubation. Dr. Solomon should perform the operation with the idea that the patient may recover sufficiently to make his own continuing care decisions, or, if that fails, that he can persuade Mr. Baker’s surrogate decision maker to extend the postoperative time commitment using ethically acceptable techniques based on respect for patient autonomy, beneficent persuasion, nudging, and shared decision-making.
Con
Jeffrey Gaca, MD
My position on this difficult question is that Dr. Solomon should neither accept Mrs. Baker's preconditions nor do the operation as long as she insists on limiting life-sustaining efforts to one week postoperatively.
The above vignette outlines an increasingly common scenario in today’s health care: the patient is an octogenarian with an immediately life threatening diagnosis (an acute aortic dissection). He is currently intubated and unable to convey his wishes. The patient’s wife is his health care agent under his health care durable power of attorney. She relates the patient’s wishes as consisting of two seemingly contradictory desires. The common refrain from family members is that “he would have everything done” to save his life but that “he didn’t want CPR and didn’t want to be on a respirator.” Importantly, she adds the caveat that if he is not better in a week, she will discontinue care. This scenario represents an ethical dilemma for the cardiothoracic surgeon. Due to the urgent nature of problem, the surgeon and the patient’s wife do not have the luxury of waiting several days or even hours to bring in consultants or other family members to discuss the situation. Due to the patient’s age and comorbidities, it is a real possibility that even if the surgery is successful he would require intensive care support such as ventilation or hemodialysis for a period beyond a week post-operatively. It is possible that even if the patient required ventilatory support or hemodialysis for longer than a week post operatively, he could recover and lead a productive and rewarding life. On the other hand, the patient has conveyed to his wife that he does not want a prolonged recuperation and the possibility that even if he were to survive, his quality of life and that of his spouse were not acceptable. All of these issues are very relevant when the surgeon has to make the difficult decision of whether to operate on this patient with the stipulation of no more than one week of post-operative care.
The question of whether the surgeon should accept limits on post-operative care is a difficult one that has many facets. The patient’s health care power of attorney designates his wife to make health care decisions for the patient. Each state has its own laws and types of advanced directives concerning this issue but the basic principles do not vary widely. The health care power of attorney becomes effective when the treating physician determines that the patient is unable to make his or her own health care decisions. The health care agent is empowered to make decisions that may be based on the patient’s written instructions or what the health care agent determines to be what the patient would have wanted. It is the responsibility of the health care agent to include the personal values of the patient in making these decisions. This is known as substituted judgment. In this instance, the patient is indeed unable to convey his own wishes and his wife, as his health care agent, has wide latitude to make decisions concerning his care including placing limitations on the length and type of post-operative care.
The clinical problem in this scenario is indeed life threatening and the best chance this patient has for survival is immediate surgical repair. Emergent aortic surgery in an octogenarian, however, is not without risks. The patient is already in respiratory failure requiring intubation and has chronic renal insufficiency making post-operative renal failure requiring dialysis a real possibility. The operative mortality for acute Type A dissection in North America approaches 25% and the morbidity from the operation approaches 70%1. On the other hand, medical therapy for acute Type A aortic dissection carries a dismal prognosis with an 80% mortality at one month16. Therefore, it is the treating surgeon’s obligation to inform the wife of the patient’s prognosis with and without surgical intervention. A very likely scenario is that if the patient were to survive the surgery, the patient would need intensive care including dialysis and prolonged ventilation for longer than the week stipulated by the wife. The patient at this point could be neurologically intact and on dialysis. This is a very difficult position from which to withdraw care. It is likely that the patient could recover renal function and have an acceptable quality of life.
I believe that the rather stringent limitation of one week of post operative care or the patient’s wife will discontinue care gives the treating surgeon the right to refuse to perform the operation. It is impossible for any physician to predict the future, and uncertainty about the potentially long term recovery of the patient may affect the post-operative care. If the surgeon agreed to perform the operation under these circumstances, it is possible that the restrictions on post operative care may subtlety or even overtly have a negative influence on the actions of the health care team. The post-operative recovery of an elderly patient from emergent cardiac surgery requires total commitment from the physicians, nurses, and family members. Without the total commitment of the all of those involved, the outcome of the surgery is potentially compromised. Therefore, the surgeon should reserve the right to refuse this complex operation without the total commitment of all those involved.
Surgeons make decisions about patient management on a daily basis and are required to act in a way that is both legally and morally correct. The right to refuse a potentially life saving treatment in this case must conform to a set of rules which reflect the values and interests of society. Ethical decisions are based on what we believe as a group to be morally acceptable. Balancing all of these factors has the potential to generate conflict for the surgeon. The basis of the conflict for the surgeon is to respect the patient’s wishes (autonomy) while at the same time respecting the surgeon’s other ethical obligations to respect justice and do no harm. The decision to refuse to perform the surgery under these conditions must respect the patient’s autonomy.
The right of a physician to refuse to treat a patient is protected under certain conditions. Physicians cannot refuse care based on the race, gender, sexual orientation, or any other criteria that would constitute discrimination. Physicians have an obligation to treat patients in an emergency situation to the best of their ability. Physicians can refuse to treat a patient when the treatment request is beyond the physician’s competence or the specific treatment is incompatible with the physician’s personal, religious, or moral beliefs. This case, however, does not involve the refusal of care; it involves the condition of care. In this arena, the physician has wide latitude in the decision making process. If no operation is performed, the surgeon still has the responsibility to care for the patient medically. It must be emphasized, however, that in this clinical scenario medical therapy is vastly inferior to surgical therapy and carries a very poor prognosis. Therefore, it is the moral responsibility of the treating surgeon to accurately describe the risk and benefits of surgery to the patient’s wife in a manner that is easily understood. It is very likely that the patient and his wife did not anticipate this complex clinical scenario when they formulated his advanced directive.
In this clinical scenario, the surgeon has every right to refuse an operation based on the current limitations on post-operative care. The best case scenario in this difficult situation is open and positive communication with the patient’s wife, the health care agent, about the expectations of care after this high risk operation. The patient’s post operative course after an emergent surgery such as an acute aortic dissection repair is rarely predictable. Conditions may arise such as disabling stroke where prolonging care would be against the wishes of the patient and his wife. In this instance it may be in the best interests of the patient to withdraw care prior to the one-week limit imposed on care. Conversely, other conditions may arise which would resolve completely, but may take weeks to improve. It is incumbent on the surgeon to explain this to the wife and hopefully reach a compromise that satisfies both parties. The best solution to this dilemma is one that respects the patient’s autonomy and allows all of those involved in the care of the patient the flexibility to deliver the highest quality care. In the end, however, if Mrs. Baker remains adamant regarding the one-week limitation, I believe Dr. Solomon should not do the operation.
Concluding Remarks
Robert M. Sade, MD
Mr. Baker faces a high probability of early death without a reparative operation. Mrs. Baker's limitation of one week of supportive care postoperatively substantially increases the usual operative mortality risk of about 25%, although the precise degree of increased risk is not known. Both of the essayists agree that the best course for them to follow is to persuade Mrs. Baker to change her mind and to be more flexible about the length of postoperative care. The critical difference between them is that Gaca will do all of his persuading before the operation, and if Mrs. Baker does not relent, he will not offer surgery. Mavroudis, to the contrary, will do the operation, then use all of his persuasive efforts afterwards. The misfortune that Gaca’s decision creates is that the patient might have recovered within a week (though unlikely) and the surgeon will have missed the opportunity to help. The problem that Mavroudis’ decision creates is that Mrs. Baker is likely to hold to the one-week limitation (her position was "adamant"), and he might well be required to discontinue life support in a patient who might have survived with more time, potentially having a demoralizing effect on him and his team.
The two essayists use different ethical justifications for their responses. Mavroudis focuses on the patient's autonomy, finding voice through his health care agent — the Bakers made their choice and must accept the consequences if persuasion and nudges do not work. Gaca focuses instead on professional integrity (although he does not use this term) — if he and his team are not allowed to provide a professionally acceptable level of care to the patient, he will not do the operation. Our essayists have used different ethical approaches; both seem valid and the decisions both have made seem justified on their own terms.
Additional Points
Some surgeons do not offer surgery to patients like Mr. Baker because of the high mortality risk and the consequent negative effect of public reporting of outcomes on their reputations and practices.17 Placing personal benefit ahead of patients’ best interests is ethically suspect18; neither essayist mentions self-protection, but for some surgeons it can (wrongfully, in my view) be a motivating factor for denying surgery.
Analogous cases in which a surgeon may cite professional reasons for refusing to operate include, for example, open heart surgery for a Jehovah’s Witness who refuses blood transfusions. In such cases, refusal to operate is understandable and acceptable. This analogy suggests an option that Gaca does not mention: Dr. Solomon can refuse the operation but at the same time offer to refer the patient to another surgeon who is willing to do the procedure (to Dr. Mavroudis, for example). The analogy also suggests an alternative that Mavroudis does not consider: Dr. Solomon can do the operation and if Mrs. Baker continues to insist on discontinuing life support at one week, assistance can be sought by appealing to a probate court (a last-resort action that would complicate the situation considerably).
Mavroudis and Gaca both assume that Dr. Solomon has average capabilities in treating aortic dissections, which is reasonable, given the brief vignette. The specific capabilities of the surgeon, however, could play an important role in decision making. A surgeon who does aortic surgery a few times a year with average results might weigh his higher mortality and morbidity risk more heavily against proceeding with the operation, while a surgeon who specializes in aortic surgery, performing dozens of aortic operations annually with lower than average mortality and morbidity might be more optimistic about successfully carrying the patient through the one-week postoperative window.
This debate provides an edifying example of how opposing yet valid conclusions can be reached by surgeons viewing the relevant issues of a particular case through different ethical lenses.
Acknowledgments
Set Acknowledgement: Dr. Sade’s role in this publication was supported by the South Carolina Clinical & Translational Research Institute, Medical University of South Carolina’s Clinical and Translational Science Award Number UL1RR029882. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Center for Research Resources or the National Institutes of Health.
Footnotes
Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Presented at the Fifty-second Annual Meeting of the Society of Thoracic Surgeons, Phoenix, AZ, Jan 23 to 27, 2016.
References
- 1.Cook T, Mavroudis CD, Jacobs JP, Mavroudis C. Respect for autonomy as a virtue in clinical medicine. Cardiol Young. 2015 doi: 10.1017/S1047951115002097. In press. [DOI] [PubMed] [Google Scholar]
- 2.Mavroudis C, Mavroudis CD, Jacobs JP, Siegel A, Pasquali SK, Hill KD, Jacobs ML. Procedure-based frequency of complications to guide informed consent in congenital heart surgery: An analysis from the STS-Congenital Heart Surgery Database. Ann Thorac Surg. 2014;97:1838–1849. doi: 10.1016/j.athoracsur.2013.12.037. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Mill John Stuart. On Liberty. 2nd. London: John W. Parker & Son; 1859. [Google Scholar]
- 4.Berg JW, Applebaum PS, Lidz CW, Parker LS, editors. Informed Consent: Legal Theory and Clinical Practice. Second. Oxford, New York: Oxford University Press; 2001. [Google Scholar]
- 5.Van Norman G. Informed consent: respecting patient autonomy. In: Van Norman G, Jackson S, Rosenbaum S, Palmer S, editors. Clinical Ethics in Anesthesiology: A Case-Based Textbook. Cambridge University Press; 2011. [Google Scholar]
- 6.Schloendorff v. Society of New York Hospital 211 N.Y. 125,105 N.E. 92. 1914 [Google Scholar]
- 7.Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 6th. New York: Oxford University Press, Inc.; 2009. pp. 99–148. [Google Scholar]
- 8.Swindell JS, McGuire AL, Halpern SD. Beneficent persuasion: techniques and ethical guidelines to improve patients’ decisions. Ann Fam Med. 2010;8:260–264. doi: 10.1370/afm.1118. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Thaler RH, Sunstein CR. Libertarian paternalism. Amer Econ Rev. 2003;93:175–179. [Google Scholar]
- 10.Cohen S. Nudging and informed consent. Amer J Bioethics. 2013;13:3–11. doi: 10.1080/15265161.2013.781704. [DOI] [PubMed] [Google Scholar]
- 11.Thaler RH, Sunstein CR. Nudge: Improving decisions about health, wealth, and happiness. New York, NY: Penguin Books; 2008. [Google Scholar]
- 12.Thaler RH. Nudges, for good and bad. New York Times. 2015 Nov 1; [Google Scholar]
- 13.Murray E, Charles C, Gafni A. Shared decision-making in primary care: tailoring the Charles et al model to fit the context of general practice. Patient Ed Counsel. 2006;62:205–211. doi: 10.1016/j.pec.2005.07.003. [DOI] [PubMed] [Google Scholar]
- 14.Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango) Soc Sci Med. 1997;44:681–692. doi: 10.1016/s0277-9536(96)00221-3. [DOI] [PubMed] [Google Scholar]
- 15.Charles C, Gafni A, Whelan T. Decision-making in the physician patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med. 1999;49:651–661. doi: 10.1016/s0277-9536(99)00145-8. [DOI] [PubMed] [Google Scholar]
- 16.The International Registry of Acute Aortic Dissections (IRAD): New insights to an old disease. JAMA. 2000 Feb 16;283(7):897–903. doi: 10.1001/jama.283.7.897. [DOI] [PubMed] [Google Scholar]
- 17.Cerfolio RJ, Jacobs JP, Sade RM. The ethics of transparency: publication of cardiothoracic surgical outcomes in the lay press. Ann Thorac Surg. 2009:679–686. doi: 10.1016/j.athoracsur.2008.12.043. [DOI] [PubMed] [Google Scholar]
- 18.Wasfy JH, Borden WB, Secemsky EA, et al. Public reporting in cardiovascular medicine: accountability, unintended consequences, and promise for improvement. Circulation. 2015;131(17):1518–1527. doi: 10.1161/CIRCULATIONAHA.114.014118. [DOI] [PubMed] [Google Scholar]