The American Journal of Bioethics

Getting to “Yes” When the Patient Says “No” Jeffrey P. Spike, University of Texas, Houston On the face of it, this is a very simple case. But in fact it has at least two different dilemmas that make it exceedingly difficult. For that reason, I find it almost a paradigm for clinical ethics consultations. Cases that appear simple on first glance rarely are. The first dilemma is that the patient is making a choice that would be described by almost all health care professionals as irrational. The request for an ethics consultation was, from all appearances, to get the patient to change his mind, to come around and agree to do the rational thing. The surgery recommended is, as surgery, low risk. We know just what will result, and what rehab will be needed, and the chance of getting the predicted outcome is very high. It is not experimental or innovative surgery in any way. And it has a high likelihood of adding decades to the patient’s life. The second dilemma presented is that the patient asks the ethicists to not talk to his family. What exactly is, or should be, the protocol in those circumstances? Ethics needs to have clear guidelines in these circumstances, along with the equally common scenario of when the patient says they don’t want to talk to the ethics consultant. Should that be the end of the consult? Besides these two genuine dilemmas, there are other issues worth addressing that might help resolve this case. As to the first of the dilemmas presented in this case: Human behavior is not best approached as if rationality is the norm, or a valid standard. We live in a peculiar stage of history where rationality has been exaggerated as an element of human behavior, mostly by an overly influential school of economists who are more tuned into mathematical models than into, say, clinical psychology or personality theory. The ethicist’s job cannot be defined as trying to get patients to be rational, or we will fail all too often. But we can accept responsibility to provide a second opinion on the risks and benefits of a proposed intervention, to help the patient make a decision based on his own values (whether those values are rational or not). To be rendered a paraplegic as a teen (assuming the event happened to this patient when he was a teen) is psychologically traumatic. Imagine the abrupt change if he was healthy, walking, and risk-taking one day, then told he would never walk again and would need to adhere to numerous difficult medical regimens just to avoid life-

threatening infections every day for the rest of his life. Whether he was somehow at fault or not, one cannot be blase about how emotionally and behaviorally difficult that adjustment would be. The thought that it would have been better to have been killed instantly is likely to have occurred to him. Appreciating that he now has a second chance to live, and giving positive value to the rest of his life, might be easier to see from the viewpoint of an outside observer than from the patient’s. He might, indeed, see his current condition as a second chance to die. As an ethicist, one of our most important resources is telling the truth, and having an honest conversation without any euphemisms. For the most part patients appreciate our honesty, even when it is sometimes seen by others (e. g., family members) as brutal honesty. I have had patients discuss things with me that they had refused to discuss with anyone else, because they realized that once ethics is called, no one is bluffing. Their life truly hangs in the balance, and I may be the one to take their side if they can reassure me that it is what they truly want, and they understand and appreciate the consequences of their choice, and their request is not simply an understandable protest of the terrible choices they have been left with. In a heart-wrenching case long ago that had some common elements with this one, I agreed to support a recent quadriplegic’s request to stop the ventilator under the condition that he wait one week and talk to a number of people first, including family and loved ones, and patients who had similar injuries. In the end, he did not change his mind, and the hospital withdrew life-support (Spike 2000a; 2000b). The present case, however, has some important differences. For one thing, not all disabilities are equal. The loss of ambulation is terrible, and the able-bodied cannot minimize it. But the loss of the ability to breath, and needing to be on a portable ventilator and in an electric wheelchair, is very different, and the resulting life very much more fragile. As an able-bodied person, I cannot convincingly preach about how a life in a wheelchair can be a good life. But having teenagers who are in wheelchairs talk to the patient could be much more valuable. I would also consider “movie therapy” in this case. The movie I would prescribe would be “Murderball.” The film is about a group of young men in wheelchairs who play wheelchair rugby

Address correspondence to Jeffrey P. Spike, University of Texas, Houston, 6431 Fannin, JJL Suite 410, Houston, TX 77030, USA. E-mail: [email protected]

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Research Ethics

(“murderball”). It is disturbing, funny, and inspirational at the same time. The young men in the documentary are able to resume a life of risky physical activities much like the life that they had enjoyed before their injuries. I could imagine it might give this patient a sense of hope for his future. As to the second dilemma in this case: I would insist on speaking to some members of the patient’s family. The description of the life-threatening ulcers is a legitimate medical concern, bordering on medical neglect. To agree to send him back home to those conditions might well be irresponsible. So some representatives of the health care team will have to address those concerns with the family. Is it unethical to talk to family members when the patient asks you not to? This is a dilemma, that is, it is pitting the patient’s autonomous request against his best interests. But I would hold that ethicists have a fiduciary duty to the patient, and this is a complex duty—not merely to be a patient-advocate, but to balance the patient’s choices with his interests. That is the same duty that other members of the health care team have. In this case, I would need to discuss with the family the problems they are having with caring for the patient. And if he were to refuse surgery and go home to die, they would need to be part of that planning as well. One other issue raised by this case is whether his age makes a difference. If he were 17, would we have the right to ignore his wishes, but because he is an adult (legally) we cannot? The law varies more than many people realize on this point. Some states recognize the mature minor doctrine, as it is called, giving some decision-making authority to minors (people under age 18). In states that do not have any such law, it is sometimes mistakenly thought that minors have no rights at all (or that it would be “illegal” for them to make decisions for themselves, as one person said to me). I would say, in contrast, that states whose laws do not address the issue leave the rights of minors more clearly in the category of an ethical issue. But there is substantial ethical support for recognizing that many teens under 18 have decision-making capacity. In those cases we must give them substantial input in the decision-making process, expanding the circle of shared decision making from the doctor and the parents to the doctor, the parents, and the mature minor (Committee on Bioethics, American Academy of Pediatrics 1994; Committee on Bioethics, American Academy of Pediatrics 1995; Weithorn and Campbell 1982). However, this is not an issue crucial to the current case because this patient is 18. If one wants to argue that he is

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too immature to make this decision, an immature adult in contrast to a mature minor, so to speak, that would be a difficult argument to win. Far too many—if not all—adults could be said to be immature when facing difficult medical decisions. Helping them with the process is one of the primary skills for all clinicians, and not just clinical ethicists. But denying their rights would be an unjustified overreaction, not supported by law or ethics. At best, as some economists have suggested, we can use some powers of persuasion to provide a “nudge” in what we think is the right direction. No coercion, no deceiving, and not even any misleading can be justified, but there is also no reason to underplay the stakes. After a certain point in the progression of his infection, no change of mind will be possible, and an act of protest about poor treatment will lead to a possibly unintended death. I would tell him this in so many words, and talk to him until I was convinced he understood. Thus we have an obligation to try to help him with his decision, but there are limits to persuasion. We cannot justify crossing into coercion, refusing to listen to his wishes until he agrees with us. Hence our limit: we do our best to build trust, and wait until we are confident he understands and appreciates the consequences of his choice. Sometimes our persistence itself contributes to the patient’s appreciation of the stakes. Over the course of a number of daily visits (perhaps, again, over a period as long as a week while providing IV antibiotics) he may change his mind; however, we cannot claim any right to make him change his mind, and we must accept that it is his decision to make in the end. &

REFERENCES Committee on Bioethics, American Academy of Pediatrics. 1994. Guidelines on forgoing life-sustaining medical treatment. Pediatrics 93(3): 532–536. Committee on Bioethics, American Academy of Pediatrics. 1995. Informed consent, parental permission, and assent on pediatric practice. Pediatrics 95(2): 314–318. Spike, J. P. 2000a. Controlled NHBD protocol for a fully conscious person. Journal of Clinical Ethics 11(1): 72–76. Spike, J. P. 2000b. Author’s response: The limits of persuasion. Journal of Clinical Ethics 11(1): 92–93. Weithorn, L. A., and S. B. Campbell. 1982. The competency of children and adolescents to make informed treatment decisions. Child Development 53(6): 1589–1598.

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Getting to "yes" when the patient says "no".

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