Consider the case of A Family's Refusal of Blood Transfusion for a Mother and Her Son. Suppose you are an ethicist called in to help in this case. What would you advise? In your answer, you should address the following (if applicable):
Why does the situation described pose an ethical problem for the people involved, as opposed to a practical, legal, or technical problem? Explain what ethical principles are relevant to the case, how they apply to the case, and whether they conflict with each other. Are the ethical principles you mention generally accepted or controversial?
This is an ethical problem because the doctor has two ethical duties which apparently conflict, the duty to respect the wishes of the patient (autonomy), and the duty to treat a patient in need (beneficence).
In respecting the wishes of a patient, one must be sure what those wishes are (or were) and that they were formed when the patient was mentally competent and fully understood the options that would be available to him or her, and fully understood the consequences of his/her wishes. Although one only has the spoken word and unspoken gestures of the family to go by, there is no reason to doubt that the mother was competent in making her decision. This is less clear in the case of the son, since he was only 16. Although he is old enough to understand the issues, it is not clear that he really thought through the consequences of his beliefs. Teenagers might well question the beliefs of their family.
In deciding what is best for the patient, we should distinguish between medical health and the total well-being. It is clear that not allowing a blood transfusion would be bad for the patients' health. However, the patients apparently believe that it they would not be able to get into heaven if they have transfusions, and so they would say that the transfusion is not good for their total well-being. The doctors may not agree them, but this is not a medical question, but a religious disagreement. Doctors are not experts in religion, and indeed, in the US no one has the authority to say with certainty what is right and wrong as far as religion goes.
[Justice is not an issue here. "Justice" refers to social justice, which is the fair distribution of resources either on the small scale (e.g., deciding which person in need should get an organ transplant) or the large scale (e.g., how much money to put into Medicaid). The issue here is not how to portion out scarce resources.]
What legal issues are relevant to making the decision?
The Supreme Court has ruled (for example in the case of Nancy Cruzan) that when there is sufficient evidence of a that an adult would have wanted to refuse life-saving treatment, those wishes should be respected. However, the rights of a family to refuse treatment for their children on religious grounds is less well-established. If the hospital went to a judge to ask for the authority to overrule the wishes of the family, it is not certain what would be decided, since it may well depend on local laws and the judge's interpretation of the law. It is, however, quite likely that the judge would say that the family's wishes should be respected. [Note that while the Canadian Supreme Court has ruled that parents cannot refuse treatment for their children, matters are not so clear in the US courts. It may also make a difference what the opinion of the child is, especially if the child is mature and rational.]
If we go along with the family's decision to have no blood transfusion, and get full informed refusal to the treatment from the next of kin, then the hospital will not be legally liable for the patients' deaths. (The family will also not be liable to be prosecuted for child neglect, at least in the US.)
If we treat either the son or mother against the family's wishes, they may sue us for saving their lives. However, if we get permission from a judge to overrule the family's wishes and treat the patients we cannot be sued.
What are the main options available to the individuals involved? You should only include realistic options, and you may find it useful to explain why the options you are setting out might be useful. You should think creatively to suggest options that are not mentioned in the text.
The doctors could treat both mother and son, the son but not the mother, or neither. They could treat one or both and withhold the fact that they have treated them from the family. However, withholding information or lying to the family would be a bad idea, since it is unethical and it could get the hospital into lots of trouble if it became public knowledge. It would also be very bad press for the hospital, and it is possible that the family would sue the doctors who had acted against their wishes. However, it is not very likely that the family would sue, because Jehovah's Witnesses are generally not wealthy and are reluctant to take such legal steps. [Note that the fact that treating but not telling the family is a bad idea does not mean that it is never done. Some physicians find it almost psychologically impossible to let a person die when it would be relatively simple to save his or her life.]
The doctors could bring in a third party to talk to the family. This might be a social worker or therapist, or maybe better, a local religious leader of the Jehovah's Witnesses, to help them think about their decision in this very difficult time. The fact that the father has said little may suggest that he is torn about his decision, and it might be possible to convince him to change his mind, at least about his son. As with most ethically difficult cases, we should look for a solution which satisfies the wishes and respects the rights of everyone involved. It is essential to generate as much communication as possible, so everyone involved knows the relevant facts and differing points of view, and so has greater chance to think of a solution or change his or her mind. Of course, practical and emotional issues during medical crises such as this one make open communication more difficult, but it should still be attempted.
What further information would be useful in making your decision? For example, do you need more details about the patient, his/her family, medical procedures and the risks that they carry, or the social services that are available? Who would you ask to get this information?
It is possible that the mother has previously written an advance directive (although the family would have probably mentioned it already if she had). We should double check this, though. The son may have also expressed his views. Although he is too young for any such document to be legally binding, it could be relevant to the ethical issues.
We need to know more about the religious convictions of the mother and son. If the family was wavering in its faith or the mother had recently converted to becoming a Jehovah's Witness, we might be less inclined to go by what her sister-in-law is recommending.
It is important that if we are not going to give blood transfusions, then we must be absolutely sure that this is what the patients would have wanted for themselves. So far all we have as evidence is the word of the father and sister. The sister is more vocal, but she is not necessarily the person whose opinion counts most. She may also have her own religious agenda, wanting what she thinks is best for her relatives, which may not be the same was what they would want. It is especially important that we get clear about what the beliefs of the son are, and how strong his convictions are. If there is any doubt that he might have decided to have the blood transfusion, we should seriously giving the transfusion. Since he is presently unconscious, we cannot ask him, and we might suspect that the family could portray him as a more devout believer than he really was.
It would be useful to find out whether the Jehovah's Witnesses make any exceptions to their policies. For instance, it is possible that they believe that a person will not go to hell if s/he was given a transfusion without his/her consent. [This may be the case, for instance, if a person is given a blood transfusion before it is discovered that she is a Jehovah's Witness, or if her wishes are simply ignored by doctors, as they sometimes have been.] It could be worth making a phone call to the central organization of Jehovah's Witnesses.
It would be useful to know if there is any medical possibility of doing without the blood transfusion, or at least extending the time we have for consultation with the family by a few hours. Time is working against us, and since these are difficult emotional issues, we really need to buy as much time as we can. One of the doctors is already familiar with Jehovah's Witnesses, and this will be a great help. But there may be specialists around the country who are even more familiar with this type of case, and we might consult with them by phone.
Who should be consulted in the decision-making process, and who has the rights or responsibilities to make the final decision?
The father is the main decision-maker in this situation. There is also a possibility that he is under the influence of his sister, who is much more vocal than he is. It would be a good idea to get him on his own to ask his opinion. He might also want to talk with a minister (Jehovah's Witness, if one is available) about his view. This may help him think through the difficult decision he has to make. He may himself need help, if he is in shock. We need to talk to him more to find out if he is even capable of thinking straight at this time. Other family members may be able to tell us more about what the son would want.
We should consult with the hospital bioethics committee, or if there is not time to convene a meeting of the whole committee, at least consult some of the members of the committee. It is important to consult with the hospital lawyer(s) as well, to find out the liability of the hospital if either the patients die or we treat them against the family's wishes.
It could be useful to consult with a senior doctor or hospital administrator to inform them of the situation and get their advice.
Should there be reason for us to believe that the son's religious convictions were not as strong as his parents', and yet the father still refuses to allow a blood transfusion, we may as a last resort go to a judge and try to get him/her to order that the father's wishes be overruled.
Consider the reported reasoning of people in the case. Is their reasoning well-argued? Do you agree with it or not? Explain.
The staff physician's argument that we can assume that these patients would refuse blood transfusions because all Jehovah's Witnesses is simplistic. It does not recognize that some people do not accept every part of the official doctrine of their own religion.
The surgical resident's reasoning is powerful, but rather paternalistic. It seems that he is not taking the religious beliefs of the patients very seriously, because he thinks it is quite possible that they would abandon them when faced with this life-or-death situation. But his point that "if they had any doubts about what the patients would want, they should err on the side of life" seems right to me. A patient's wishes are very important, but in cases like this we should require a high standard of evidence as to what the patient's wishes really are.
The medical resident's argument seems exactly right to me, since it agrees with what I have already said.
What decision would you recommend? Explain why you believe this decision is more reasonable than any other.
If we can establish that the mother would most likely have refused a blood transfusion, then we should not give her one. We should of course still do everything we can to keep her alive within the agreed constraints, but if she dies, as she probably will, we will know we have respected her wishes. However, it is far less clear what to do in the case of the son. I think we should make every effort we can to get the family to change its mind in his case so we can give a blood transfusion. If they still refuse, and we as a hospital have the resources and the time, we should go to a judge to ask to overrule the family's wishes. Ideally, we should not treat the son without the judge's permission. It may take some time to get a court order from a judge, if we can get one at all, and the son may die in the meantime. (Note that this is happening during the middle of the night on a weekend: it will probably be hard to find any judges, and we certainly can't wait until Monday morning.) In the end, it will be the choice of the doctors involved. Even without a judge's permission, they could decide to give the son a transfusion, and risk being sued by the family. I think that ethically this is the right thing to do, because the medical welfare of the son is so crucial, and his beliefs are not sufficiently considered by himself, the evidence the doctors have about them is not overwhelming, and so in this case beneficence can trump autonomy. They would have a reasonably strong defense if they have followed the advice given here, and taken steps to consult with the family, especially the father, and determine the real beliefs of the son, and found the evidence lacking. However, being involved in such a trial would be expensive and time-consuming, whatever the outcome, which is hard to predict. The whole episode could damage their careers. The doctors have to decide for themselves if they are prepared to take this risk.