Does this patient have decision making capacity to refuse a blood transfusion that will likely save his life? You are the ethics consultant, and the decision is yours.
There are three witnesses, the Spirit, the water, and the blood, and these three agree.
John 5:8 (RSV)
In the ethics quiz “Of Blood and Truth” in the May issue of Psychiatric Times, readers were asked to assume the role of an ethics consultant called emergently to the bedside of Mr M, a patient in critical need of a blood transfusion. Mr M had accepted several transfusions earlier in the hospitalization but now says he is a Jehovah’s Witness and allowed the transfusions only because he thought he was receiving his own blood. An advance directive cannot be found, nor next of kin. The emergency contact is a girlfriend, S, who told the attending she thought Mr M was “crazy” and advocated strongly for the transfusion.
The attending has concerns the patient lacks the decision-making capacity to refuse and could even be suicidal. The consulting psychiatrist believes the patient is alternating between delirium and lucidity and is not suicidal but frustrated with his medical situation. The attending is anxiously awaiting your arrival to resolve the dilemma.
Before you can begin to offer ethically justifiable recommendations, you must work through the answers to 4 key questions.
1Ethics consultations often involve a number of different and often conflicting ethical concerns and questions. As the ethics consultant, which of the following do you think is the central ethics issue in this case?
A. If the patient has decision-making capacity, he has the right to refuse a blood transfusion.
B. It is unclear whether the patient has a surrogate who is able and willing to make decisions that respect his wishes and values.
C. Since the attending has the ability to save the patient, she also has the duty to do so since she does not believe he has capacity.
D. The team believes the patient is incapable because he is refusing the clinically indicated medical treatment.
Option A is certainly true. Courts have upheld the right of adult patients with decision-making capacity to refuse a blood transfusion based on religious beliefs.1 (The same is not true for children.) But the psychiatrist is equivocal about the patient’s capacity secondary to his fluctuating mental status.
If this is true, then B-identifying a surrogate-is crucial. But is this really an ethics question? Or is it part of the fact pattern we need to gather in doing the consultation?
The primary team has identified S-a girlfriend whose status as a surrogate would be highly dependent on state law. Often, overworked intensive care and medical teams understandably cast about for anyone to help make urgent medical decisions, and they frequently do not have the knowledge to identify the ethically appropriate decision maker. This is a good place to involve social workers in an attempt to locate an advance directive. If one is not available-which is the situation for about 75% of American patients2-try to contact any family members, who would be the designated surrogates in most state hierarchies of priority.
The attending is morally distressed because of all the uncertainty. Acting on a default ethical and legal position many physicians assume, she believes she has an obligation to save Mr M’s life (option C). The attending considered the implied or presumed consent, often employed in emergencies when there is no time and no voice for the patient.3 Except that the attending recognizes-and herein lies the source of her distress-that if Mr M is capable and this is his real faith position, then she should respect the patient’s beliefs, even if it means he dies.
Option D is true more often than not. Scholarship and experience suggest that clinicians are far more likely to question capacity or determine a patient is incapable when he or she refuses medical and psychiatric treatment or asks to leave the hospital against medical advice.4
2If the psychiatrist determines that the patient lacks decision-making capacity and the team cannot identify another surrogate decision maker, can S act on Mr M’s behalf?
A. Yes, because she is acting out of his best interests to save his life.
B. No, because she is not making the decision according to the patient’s preferences and values as she is required to do as a surrogate.
C. No, because only an individual who shares Mr M’s Jehovah’s Witness beliefs can be asked to make a decision based on religious grounds.
D. Yes, because there is no advance directive and so the surrogate has to make the decision she believes Mr M would make if he could think clearly.
A expresses what many health care professionals-and even laypersons who do not share the patient’s beliefs-may secretly think should happen. From the comment S made to the attending, it seems pretty clear she shares this perspective. Often exasperated practitioners would point out that S would be acting in Mr M’s broad best interest of continued physical life, while detached ethicists will opine Mr M’s higher spiritual values are being discounted.
When confronted with this understandable lack of understanding, I try to remind myself and my fellow clinicians that all of us have beliefs and values that another individual could feel are irrational or-put more kindly-that are at least not worth dying for. Option C suggests that only a person who shares Mr M’s faith tradition should make the decision about blood transfusions. This is why members of the local congregation-whether it is Jehovah’s Witness5 or any other religious tradition with strong and distinctive beliefs and practices-will frequently be present at the bedside of a fellow believer to ensure the patient’s rights and wishes are honored. But while shared belief systems probably make difficult decisions such as refusing a transfusion more ego-syntonic, respecting only the patient’s beliefs is ethically considered necessary.
Option B is correct in that any surrogate with integrity who recognizes that his or her legal and ethical duty is to “substitute” the patient’s “judgment” were he able to exercise it could make the decision about transfusion. If S truly turns out to be the only person in Mr M’s life who can act on his behalf, it would not be her girlfriend status but her inability to respect what are supposed to be his beliefs and preferences that would disqualify her.
D uncovers yet another layer of uncertainty. Do we really know if Mr M is a Jehovah’s Witness who actively practices his faith? Many persons for whom religious beliefs are very important in medical decision-making carry with them documents, symbols, or alerts indicating their faith stance. Mr M did not have any testimony to his beliefs in his belongings, nor had he mentioned his religious objection to transfusions at any time earlier in his hospitalization. But is that sufficient proof to violate a person’s most sacred commitments or conversely to risk their life?
3One of the most important things to do as either an ethics or psychiatric consultant when a patient refuses a treatment-especially one that is lifesaving-is to try and understand why he is refusing. Which of these rationales do you find most plausible?
A. Mr M is expressing his autonomy in the only way open to him in circumstances where he feels he is not respected and has little control.
B. Mr M really believed that he was receiving an autologous transfusion and that his religious beliefs permitted him to accept his own blood.
C. Mr M is not truly a Jehovah’s Witness but is refusing the transfusion as a way of indirectly killing himself without the psychiatrist being able to legally intervene.
D. Mr M did not really have decision-making capacity when he initially accepted the transfusions.
The psychiatrist can be of great assistance to both the ethics consultant and the attending physician through empathic validation of what Mr M is trying to communicate through his refusal. Option A is likely at least part of the story. Mr M had just endured several attempts at an ultimately failed bone marrow aspiration, and no one can tell him what is wrong after days of tests, except that he might have cancer-which to him, as to many patients, is a death sentence he would rather carry out himself. Fortunately, at the time of the consult he is not asking to leave the hospital against medical advice, but if the current crisis is not resolved, that might be his next step.
Even though the psychiatrist does not think option C is accurate (Mr M not being suicidal), he will have to decide whether Mr M can really be allowed to go home in his physically ill and mentally disturbed state.
To answer B will require a knowledgeable chaplain or a call to a representative of the Jehovah’s Witnesses. Mainline members of the religion in the US do not accept autologous blood transfusions because “Witnesses believe that blood removed from the body should be disposed of, so they do not accept autotransfusion of predeposited blood.”6 This returns us to the question of Mr M’s faith.
Option D raises even more doubts regarding Mr M’s authentic views about blood transfusions. Ethics and psychiatric consultants frequently find that the informed consent process was less than adequate, and given the severity of Mr M’s anemia (even after transfusion of 2 units of packed red blood cells, his hemoglobin and hematocrit are 7 g/dL and 20%, respectively) and other medical conditions, it is not hard to see how he could have been delirious from hypoxia when he consented to the previous transfusions in the ICU.
4The attending is asking for your recommendations regarding whether to transfuse the patient. Which of these responses would you give?
A. Transfuse Mr M so that his delirium can resolve and he can make an informed and reasoned decision regarding the transfusion.
B. Recognize S as the authorized decision maker and follow her wishes and transfuse Mr M.
C. Respect Mr M’s beliefs as a capable adult who can legally refuse a blood transfusion on legal grounds.
D. Obtain the agreement of a second attending physician and transfuse the patient using emergency consent.
As in so much of medicine and psychiatry, the ethics consultant must now make a recommendation with serious consequences with incomplete information. Option A is ethically attractive to physicians because it appears to permit the attending to both save the patient’s life and respect his beliefs. But as in Question 2, this fails to respect the salience of religious commitment in a person’s life and choices or that for such an individual, there could be spiritual and even psychosocial repercussions from transfusion more unbearable than death.
Option B returns to the dubious role of girlfriend S-not only in Mr M’s daily existence but more significantly in his spiritual life. We have no idea of the nature, length, or depth of the relationship between the two and whether S can really meet the bar of surrogacy to even know which direction Mr M would choose in this impasse. We must have a healthy skepticism that for motives of good or ill, she does not share his religion but wants to keep sharing his life.
Option C is the most ethically justifiable course if there is surety that Mr M is capable and a devout Jehovah’s Witness. Yet if he is either incapable or not a believer, then the choice risks his death without a legally authorized surrogate or a higher spiritual warrant.
D is a version of A but may make the attending feel less burdened because she has the concurrence of a colleague. This is the “2 physician rule,” which is the law in many states and also included in many hospital policies for decision-making in an emergent situation when the patient has neither capacity nor a surrogate. The research shows that physicians make these emergency decisions according to medical rationales that express our own medical culture and values-meaning in general that Mr M gets the transfusion.7
Astute readers may wonder why neither the psychiatric consultant nor the attending physician has considered perhaps the optimal resolution of the conflict to be the use of alternative blood products and methods, which would be acceptable to a Jehovah’s Witness and which have reasonable outcomes.8 This would enable both ethical values posed at the beginning of this commentary to be upheld. Ethical dilemmas are about choices not between right and wrong, which would be straightforward rules or law-but between right and righter or wrong and wronger, the varied valences of human moral action. The job of the consultant is to remind and help stakeholders find that even in the most desperate of moral conflicts we must strive to follow the maxim of the late Mr Spock’s “there are always options.”
1. Barron CH. Blood transfusions, Jehovah’s Witnesses and the American Patients’ Rights Movement. In: Maniatis A, Van der Linden P, Hardy J-F, eds. Alternatives to Transfusion in Transfusion Medicine. 2nd ed. Oxford, UK: Wiley-Blackwell; 2011:531-558.
2. Rao JK, Anderson LA, Lin FC, Laux JP. Completion of advance directives among US consumers. Am J Prev Med. 2014;46:65-70.
3. Veatch RM. Implied, presumed and waived consent: the relative moral wrongs of under- and over-informing. Am J Bioeth. 2007;7:39-41;discussion:33-34.
4. Ganzini L, Volicer L, Nelson WA, et al. Ten myths about decision-making capacity. J Am Med Dir Assoc. 2005;6(suppl 3):S100-S104.
5. Shaner DM, Prema J. Conversation and the Jehovah’s Witness dying from blood loss. Narrat Inq Bioeth. 2014;4:253-261.
6. Dixon JL, Smalley MG. Jehovah’s Witnesses. The surgical/ethical challenge. JAMA. 1981;246:2471-2472.
7. White DB, Curtis JR, Lo B, Luce JM. Decisions to limit life-sustaining treatment for critically ill patients who lack both decision-making capacity and surrogate decision-makers. Crit Care Med. 2006;34:2053-2059.
8. Posluszny JA Jr, Napolitano LM. How do we treat life-threatening anemia in a Jehovah’s Witness patient? Transfusion. 2014;54:3026-3034.