principle of beneficence may weigh more heavily than respecting individual autonomy.
Adults with appropriate decision-making capacity express their autonomy through the informed consent process. Physicians demonstrate respect for the autonomy of competent patients by accepting their informed decisions, whether or not they consent to medical treatment. It seems self-evident that without respect for informed refusal, the concept of informed consent is invalidated: “consent” would then merely be acquiescence of the patient to the physician’s recommendations. Adults are therefore even allowed to make what doctors may sometimes consider unwise or foolish decisions. The physician does not have to agree with the patient, but neither can a physician be compelled to give inappropriate, bizarre, or substandard care. (For more on informed consent, please see Chapter 1.)
In order to give informed consent, a patient must have appropriate decision-making capacity, be able to understand the nature of the procedure, the risks, benefits and alternatives including that of doing nothing, and the probable outcomes of both acceptance and refusal of the proposed procedure. In addition the decision must be made free of coercion. Coercion is present if the patient feels threatened, bullied or subjected to irresistible pressure to make a decision he or she would otherwise not make.
Legal precedents
Although legal decisions are not always synonymous with “ethical” ones, a review of some legal precedents regarding JWs and how they have changed provides some insights into how medical ethics has shifted in the US from a paternalistic and/or beneficence-based emphasis, to one of respect for autonomy.
In 1964, two US courts compelled transfusion for adult patients. In Georgetown College v. Jones4 the court of appeals ruled that the “patient’s religion merely prevented her from consenting to a transfusion, not from receiving one” and a transfusion was ordered. In Raleigh Fitkin Memorial Hospital v. Anderson, a pregnant Jehovah’s Witness was not permitted to refuse a necessary transfusion.5
Over the last 40 years, US courts have rejected these cases and consistently upheld the rights of adult Jehovah’s Witnesses to refuse blood even when a transfusion would be life saving – and even when others, such as dependent children, may be indirectly affected. On the other hand, when the patient is a minor child and hospitals have sought court orders to give blood believed to be absolutely necessary to preserve life, such orders have usually been granted. Exceptions have sometimes been made when an older teenager is committed to his/her religion and seems to fully understand the scope and consequences of his/her decision. Legal precedents in many European countries have paralleled those in the US.6
Specific issues to consider in this case
Key questions arise in most cases involving Jehovah’s Witnesses and others who refuse certain types of treatment on religious or other grounds.
Does the patient have appropriate decision-making capacity?
All patients over the age of majority are assumed to have adequate decision-making capacity unless proven otherwise. Anesthesiologists can usually tell whether patients have decision-making capacity, which is generally present if the patient understands the nature of his/her illness/condition, the nature of the proposed procedure and its inherent risks and benefits and alternatives, and the consequences of refusing treatment. In doubtful cases, evaluation by a psychiatrist may be helpful.
Have all appropriate risks, benefits and alternatives been explained?
There are other important issues in this case that need to be addressed, aside from the usual explanation of anesthesia and surgical risks. These include assuring that the patient understands that there are some blood cells in solid organs; explaining the specifics of blood conservation techniques; and clarifying the risks of not accepting blood in the face of massive hemorrhage.
In nonemergent cases such as these, there is also often time to plan. Patients should be encouraged to discuss their options not only with the surgical team, but also with the local hospital liaisons from their church (who can be a resource for physicians as well). Preoperative treatments with erythropoietin, iron supplements, or other methods to improve baseline hematocrit should be discussed. Consideration should also be given to intraoperative use of DDAVP and any other measures that will minimize blood loss during the procedure.
Can a surrogate decision-maker refuse transfusion for an incompetent patient?
All JWs are encouraged to carry a durable power of attorney that explains in detail what their beliefs are concerning blood and blood products (see Fig. 3.1). If this is not available and it cannot be verified that the patient is a practicing JW, then physicians generally err on the side of transfusion. Consultation with hospital legal affairs or an organization’s ethics committee may be helpful if the appropriate action remains unclear.
Can a surrogate decision-maker change a plan made by a previously competent patient?
A surrogate decision-maker’s task is to make decisions for the patient when the patient cannot make them for himself. Ideally, surrogates are not supposed to express their own wishes, but are supposed to make the same decision that a patient would make if he/she were able to do so. Once the patient’s decisions are known, whether physicians agree or not, those decisions should stand unless new information becomes available that brings the previous decision into question. This can be particularly difficult if the patient has refused a treatment that the physician thinks is life saving, and the physician knows, believes, or even hopes that the surrogate would capitulate and allow the prohibited treatment. That is when physicians discover if they truly believe in patient autonomy. (For more on surrogate decision-making, see Chapter 4.)
Is the patient making a decision that is free of coercion?
Patients should be free of coercion from healthcare providers and feel safe that regardless of their personal choices their doctors will not abandon them. Additionally, providers must also strive to ensure that the choices a patient makes are truly his/her own. It is not unusual for members of the JW church community, as well as family members, to flock to the bedside of a JW patient, both to support their loved one and also to protect him/her from receiving blood.
Sometimes the decisions JW patients express in the presence of family and church members are different from those they later express in private. In the author’s experience, this is extremely rare. However, it is important that at some point prior to surgery and anesthesia, patients have an opportunity to express their transfusion preferences to the anesthesiologist in private.7 This might be done in a preoperative holding area after the family and/or church members have been sent to the waiting room. The intent should not be to talk the patient into receiving blood, which would be itself coercive, but to insure that his/her true wishes are known and followed. If the patient does recant, it is then important to determine what, if anything can/should be told to family members about whether blood products were given. Principles of patient confidentiality demand that specifics of treatment such as this only be discussed with the patient unless there is an agreement with them to do otherwise.
Related posts:
Informed consent and the pediatric patient
The use of ethics consultation regarding consent and refusal
Revising the Uniform Anatomical Gift Act – the role of physicians in shaping legislation
Animal subjects research Part I: Do animals have rights?
Disclosure of medical errors in anesthesiology practice
Withholding and withdrawing life support in the intensive care unit
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