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Ann Thorac Surg 2002;74:1431-1432
© 2002 The Society of Thoracic Surgeons
a International Human Rights Law Institute, DePaul University College of Law, Chicago, Illinois, USA
* Address reprint requests to Dr Guinn, DePaul University College of Law, 8th floor, 25 E Jackson Blvd, Chicago, IL60604-2287, USA.
e-mail: dguinn{at}depaul.edu
This case illustrates how good people adhering to a formalistic approach to informed consent may consciously or unconsciously manipulate and coerce their patients to achieve a desired medical end. Using a series of decision-making opportunities that ostensibly conform to standard ethical practice, Dr Smith succeeds in saving Mr Charles’ life. He does so, however, by betraying the trust and dignity of his patient.
This case is not about whether a Jehovah’s Witness has the right to refuse a blood transfusion. It is about the rights of patients to live their lives according to their own values and beliefs and the duty of health-care providers to respect that right.
Taken individually, Dr Smith’s discussion of treatment and the obtaining of consent on each of the four occasions when it occurred appear reasonable and justified. At a formal level, consent requires that Dr Smith provide all relevant information necessary for Mr Charles to make an informed decision. As the medical expert, Dr Smith needs to assure himself that Mr Charles understands what he has been told. Mr Charles’ refusal of any non–self-donated transfusions in the course of undergoing triple bypass operation obviously presents significant risks of physical harm. Discussing this risk and requiring the patient to execute documents that absolve caregivers from liability arising from this decision provides one way of assuring that Mr Charles truly understands the consequences of his decision.
However, looking at the four discussions collectively suggests a pattern of disagreement and disrespect for Mr Charles and his religious beliefs. There are at least two obvious problems. First, Dr Smith immediately demonstrates his disagreement with Mr Charles by demanding that he execute a waiver of liability at the end of his first meeting with the patient. Although hospital practice commonly requires adequate documentation at each point when medical action (or inaction) is required, it was not necessary to have Mr Charles execute such a document at the first appointment when no medical intervention was planned. By doing so, Dr Smith appears to be using the process of documenting consent to demonstrate his profound disagreement with Mr Charles’ decision. Demanding that Mr Charles execute a duplicate waiver at the time of operation reaffirmed this disapproval.
The second problematic aspect of this case is Dr Smith’s treatment of Mrs Charles. Again, superficially, his actions appear reasonable. As commonly occurs, a patient in a medical crisis becomes decisionally incapacitated, and we are forced to rely on the judgment of a family member to represent him or her. Because this is the last opportunity to save Mr Charles, it appears reasonable to ask Mrs Charles. However, the goal of informed consent is not just to have someone make a decision, but to honor the wishes of the patient. To accomplish this, we have developed two complementary practices. First, we recognize the right of a patient to provide an advance directive for treatment. In most jurisdictions, this does not require the execution of a particular form. It can be evidenced by prior discussions with the patient documented in the medical record, as amply present in this case. Second, in the absence of clear advance directives (not the case here) or when a condition arises that was not anticipated at the time the advance directive was made, we seek the guidance of a family member or other legal representative who knows the patient well. In this case, what has really changed?
Mr Charles’ decision was not lightly made nor made without a profound awareness of its possible consequences. The potential consequences of refusing were very clear in each of his discussions with Dr Smith and had not significantly altered since then. Only the timing of the possible result (death) had changed—and, in Dr Smith’s judgment, the person responsible for making the decision.
Viewed in one light, Dr Smith’s treatment of Mrs Charles was respectful of the possibility of change and her rights to make that judgment. Viewed in another, it appears, consciously or unconsciously, manipulative and coercive. After Mr Charles lost consciousness, Mrs Charles, his devoted wife, was now legally empowered to make health-care decisions on his behalf. Yet, in spite of the fact that nothing significant had occurred that would suggest Mr Charles might have changed his mind, Dr Smith put Mrs Charles in the position of making the decision as to whether her husband would live or die. All she had to do was recite the magic words that she thought her husband might have "changed his mind" to allow the transfusion, and her husband would be saved. Then he let her sit with her semicomatose, dying husband to help persuade her. Mr Charles’ subsequent forgiveness of his wife reflects his appreciation of the extreme difficulty of her position. But, as Mr Charles’ attitude also suggests, this does not absolve the doctor for failing to respect his wishes.
What might Dr Smith have done differently in his treatment of Mr Charles and his wife? First, Dr Smith needs to appreciate that informed consent is not a legal bulwark to be contested over and used to mark boundaries of liability and choice. It is a process through which the patient and doctor decide on a course of treatment that respects the patient and the patient’s values. The goal is to provide the patient with the information and support necessary to make an informed decision in light of all the circumstances and values affecting that decision. Thus, there was no need for Dr Smith to demand that Mr Charles repeatedly sign waivers of liability. Execution of one set of waivers and documentation of subsequent decisions would have been adequate in most cases.
Second, although the consequences of refusing blood transfusion remains relevant to the continuing plan of treatment, Dr Smith needs to treat it as relevant datum, not as a focal point of disagreement. Once Mr Charles made an informed decision about his treatment, Dr Smith needs to accept that decision. Dr Smith should, of course, observe Mr Charles for indications that he may have changed his mind. This may include asking. But the effort should always respect the fact that consent includes the right to say no without censure or sanction.
Finally, the possibility that Mr Charles would become decisionally incapacitated during the course of treatment was not only possible but, in the event of anticipated medical problems, it was likely to occur. Given Mr Charles’ repeatedly expressed desire to refuse blood transfusions serving as an advanced directive, it is unclear whether or not it was necessary or appropriate to demand that Mrs Charles make a formal decision in this case. Nonetheless, in light of this possibility, Dr Smith should have involved Mrs Charles in all treatment discussions at an early stage, raising the issue of her capacity to make those decisions if Mr Charles was unable to do so. Dr Smith should have led a conversation involving both Mr and Mrs Charles to make sure that each was comfortable with this possibility and that Mrs Charles would be able to comply with Mr Charles’ desires—even if this meant allowing Mr Charles to die. If she could not, Mr Charles would have been able to choose another representative who could support his wishes.
There is a certain irony in the fact that the good intentions of the doctor, compliance with formal ethical procedures, and good medical care resulting in patient recovery may reflect a profound ethical failure. Nonetheless, that is the case here. Although physical health is an important value, it is not the only value in life. As Ronald Dworkin [1] reminds us, we also have "critical" values—judgments about the meaning of life and the good that may take precedence over simple survival. Whether those critical values are based on religious belief or secular values, respect for a patient’s autonomy requires that the patient make those judgments rather than the doctor caring for him or her.
References
This article has been cited by other articles:
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  D. T. Ridley Legal consequences of disregarding the wishes of a patient Ann. Thorac. Surg., October 1, 2003; 76(4): 1336 - 1336. [Full Text] [PDF]
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