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July 12, 2013 | Posted By Wayne Shelton, PhD

I have probably done several hundred clinical ethics consultations since I began doing them in the early 90’s. Though I have had some second thoughts about some of the recommendations I have made, by and large, I have usually been confident that they represented viable moral options, given the range of limited, mostly bad options that were available.  Thus, I rarely if ever thought of myself as anything but fully supportive of the recommendations made in ethics consultation.  That is, until a few months ago when I heard about a case from another ethics consultant at another location where the right ethical recommendation seemed apparent, yet somewhat problematic. The case shows the almost boundless, and at times problematic, latitude of the negative right to refuse treatment and to be left alone, even when others may be negatively affected by the decision. I thought the general fact pattern of this case would be worth discussing in this forum. 

The case involved a 40 year-old woman with full capacity who was near full term with twins. She was showing signs of pre-eclampsia, a condition “when a pregnant woman develops high blood pressure and protein in the urine after the 20th week (late 2nd or 3rd trimester) of pregnancy.” (National Library of Medicine) When this condition occurs, it is important to get the babies out as soon as possible; otherwise, both the mother and babies would be at risk of dying. So labor was induced and she was being prepared for delivery. But given that she was having twins there was the possibility of excess bleeding from hemorrhaging and other complications, so the patient was informed that a blood transfusion might be necessary. As it turns out based on her religious beliefs she stated she did not wish to be transfused with blood products and that she understood the consequence: she could possibly die. Her babies would in all likelihood be saved. Should the fact that two babies will not have a mother be counted as ethical considerations against respecting her right to autonomy? Given our current ethical environment, a patient with capacity has a right to refuse any and all medical treatments and interventions. Are there ever countervailing reasons to not honor a patient’s autonomous wishes in such a situation? Let’s proceed with the general facts of this case, as it gets even more complex.

The patient already has several children, all of which were in good health and living at home. Her husband was by her side and very much wanted her to have a blood transfusion if necessary. He did not share her beliefs about transfusion. One of the initial questions that the caregivers asked in this ethics consultation, as was reported, was: if the patient lapses into unconsciousness can her husband, her authorized health care proxy, make the decision to give her a blood transfusion if needed? Again, of course the easy answer is, no. We know the patient’s wishes and they should be documented. The function of the health care proxy is to carry out the known wishes the patient. We know the patient’s wishes clearly so we know the husband’s obligation as the patient’s proxy: follow the patient’s wishes. For the husband to make a decision contrary to the patient’s known wishes and for the physicians to follow them would be a serious ethical violation. In spite of the fact that the husband could conceivably be left with a number of children to raise without a mother, including two newborns, the ethical obligations seem clear, at least on the surface. And the case goes to even another level of complexity.

Moreover, the patient had become pregnant with twins through in vitro fertilization. It was clearly her legal right to seek this service presumably from a physician specializing in fertility treatment. And presumably there was the knowledge that pregnancy was with twins, which means additional medical complications could occur, including risks from loss of blood. Were these additional risks of medical complications ever considered in light of the patient’s particular beliefs about blood transfusion? Was there an ethical obligation on the part of the fertility physician and the patient to do so? 

The physicians and nurses in this case were very concerned that this patient was at risk of dying from a problem that could be easily managed medically. One could understand their temptation to ask, “can’t we just follow the wishes of the husband and transfuse her if we have to?” It is an interesting legal question to ask, what if this ethical violation occurred and the patient’s life was saved as a result, could she sue for damages? In this case the damage would be that she is alive to be with her family but in violation of her stated religious beliefs. Again, the ethics of this is clear and I will let legal experts debate how such a possible suit might play out in court. 

I fully realize the significance of respect for patient autonomy in patient care and the negative right of a patient with capacity to refuse treatment. Like many other clinical ethics consultants, I have spent much of my career championing this near sacred value in American society.  But is there ever a limit? Was a limit reached in this case? The answer seems to be, no! But as a matter of moral conscience, I can see how it would not be easy to recommend the ethically acceptable answer in this case. We limit patient autonomy in cases of requests for inappropriate treatments and procedures. But in the present case the request was to not be treated in certain ways. It was a case of a negative right to refuse medical treatment, not a positive right to demand to demand inappropriate treatment. If the factors in this case do not count as countervailing factors for not respecting the patient’s wishes, it is hard to imagine a case that would. The negative right to refuse an unwanted treatment seems almost absolute.  

Although it rarely happens, I suppose the conclusion from this case is, just like for physicians who sometimes cannot treat a patient in the manner they are requesting based on a conscience concerns, perhaps there are times that the clinical ethics consultant may likewise cannot in good conscience make the appropriate ethical recommendation. However, when push comes to shove, and there is no one to whom to refer the case, making difficult recommendations is what we sign up to do. Nevertheless, it is important that we hospital clinical ethicists continually flesh out our ethical discomfort with cases, even when the right ethical recommendation is made.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

5 comments | Topics: Clinical Ethics, Consultation, Women's Reproductive Rights

Comments

zeb

zeb wrote on 07/15/13 3:56 AM

it is right to say patient care and the negative right of a patient with capacity to refuse treatment. Like many other clinical ethics consultants
anna j

anna j wrote on 07/15/13 4:04 AM

so the patient was informed that a blood transfusion might be necessary. As it turns out based on her religious beliefs she stated she did not wish to be transfused with blood products and that she understood the consequence: she could possibly die. Her babies would in all likelihood be saved. Should the fact that two babies will not have a mother be counted as ethical considerations against respecting her right to autonomy? Given our current ethical environment,
Salman

Salman wrote on 02/23/14 8:29 AM

Good information. Thanks.
alex

alex wrote on 03/13/14 8:14 AM

Ah nice information as it turns out based on her religious beliefs she stated she did not wish to be transfused with blood products and that she understood the consequence: she could possibly die. Her babies would in all likelihood be saved.
ani rabaka

ani rabaka wrote on 04/16/14 11:23 AM

Thanks for sharing Ah nice information as it turns out based on her religious beliefs she stated she did not wish to be transfused with blood products and that she understood the consequence: she could possibly die. Her babies would in all likelihood be saved.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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